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Why having a named contact is so important for people with learning disabilities

A mother argues why every person with a learning disability should have a named contact.

A mother explains why she believes that every person with a learning disability should have a named contact

My son and daughter have moderate learning disabilities and depend on myself and their dad. There are no other siblings. When I wake in the night, tuned in to the slightest of noises that could signal my son is experiencing a seizure, I find myself wondering who will be there to watch over him, and his sister, when we are no longer here?

There are many questions when faced with the knowledge that your children have a learning disability, but this one is by far the most daunting. Its difficult to find words to convey the feeling this evokes. To describe it as a sense of profound void only begins to touch upon the rawness I feel in the pit of my stomach, it

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A mother explains why she believes that every person with a learning disability should have a named contact

My son and daughter have moderate learning disabilities and depend on myself and their dad. There are no other siblings. When I wake in the night, tuned in to the slightest of noises that could signal my son is experiencing a seizure, I find myself wondering who will be there to watch over him, and his sister, when we are no longer here?


Picture: iStock

There are many questions when faced with the knowledge that your children have a learning disability, but this one is by far the most daunting. It’s difficult to find words to convey the feeling this evokes. To describe it as a sense of profound void only begins to touch upon the rawness I feel in the pit of my stomach, it doesn’t come close to the sheer terror I feel. Why do I have such immense misgivings that their needs might not be met?

Allies

I quickly learned that my closest allies in securing the most basic of human rights for them are other parents. We share the struggle as we try to convince the policymakers of the reality behind the rhetoric.

White papers have identified the needs of people who have a learning disability and carers. I used to feel a sense of relief that there was official recognition, but over time came to realise the degree of my naivety in daring to believe that the vision set out in these papers would come to fruition. On an all too frequent basis sickening cases of neglect and mistreatment of vulnerable people are reported in the media, a significant proportion of these involve people who have a learning disability. 

Representation

I became a family carer representative on a regional learning disability partnership board. I wanted to understand why policies don’t always become practice and to advocate on behalf of other parents with concerns about the lives of their adult children with learning disabilities. I was struck by the good intentions of other members, but realised their input was too general. They were thinking and talking in abstract terms whereas I had two children at home. Discussions on policy didn’t connect with practice.

No one can assure us that when we are no longer able to care for our son and daughter, others will be there to care. How could there be when few people outside the immediate family are familiar with their needs? Their daily routine is paramount to their well-being. Understanding their needs, and how these are met, is crucial.

Looking ahead

I have asked the partnership board repeatedly if they would consider people who have a learning disability being allocated a named contact from social services; someone who gets to know the needs of the individual and carers and makes provision for them before a crisis develops. This has been highlighted in two serious case reviews involving the deaths of two adults with a learning disability.

Like so many parents and carers of people with a learning disability, I strive to help my son and daughter have positive life experiences. Facing up to the reality that this can’t continue indefinitely, I ardently seek peace of mind that could be gained from knowing someone will be there in the future, with enough understanding of their needs for them to continue to live safely and contentedly.


The author wishes to remain anonymous

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