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

“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.

Interviews I have carried out with 25 older carers between the ages of 65 and 83 have already highlighted some disturbing themes: isolation from others, particularly from parents with non-disabled children; struggles with the local authority to implement appropriate services; and the physical and emotional toll of caring on a long-term, daily basis.

The complexity of the caring situation varies according to the individuals involved; learning disability is a broad term that covers a huge spectrum of needs and ability. However, frequent references to a lack of support, constant exhaustion and the implications for the rest of the family were enough to alarm me as a parent at the beginning of my caring career.

Planning for the future care of adults with a learning disability who live with older carers is a significant feature of the Valuing People white paper, published in 2001 and refreshed this month. Included within the original document was an acknowledgement of the support provided by older carers, along with recommendations for meeting the needs, and planning for the future care of, the adults they care for.

Although Valuing People has increased the public profile of carers, legislative support is still in its infancy. The Carers (Equal Opportunities) Act 2004 introduced a statutory obligation on councils to inform carers of their right to an assessment of their needs, independent of the person for whom they provide care.

Interviewees recalled an assessment of their needs taking place but were unclear about the outcome. Some were cynical about the outcome of such an assessment and described previous situations where promises of support made had not materialised. Just how far the Act has been implemented and interpreted appears to vary between local authorities.

The increase in both legislation and policies, together with recognition of the role undertaken, should enable parent carers like myself to access support where and when it is needed. But whether this will be too little too late to rescue my own family and others like us – and to make up for our past experiences – remains to be seen.

Val Gant is a social worker in a learning disability team in the North of England, and is currently undertaking a PhD at Liverpool John Moores University. She is a mother of five; her youngest daughter has a severe learning disability.