'Young Carers': Disabled Parents Perspective

By Michele Wates

The Social Services Inspectorate report 'A Jigsaw of Services' {DH April 2000] highlighted the piecemeal and scanty nature of services and resources available to support disabled adults in their parenting role. At the same time, over the past 10-15 years a veritable industry has developed around providing support for so called 'Young Carers', i.e. young people who find themselves trapped in inappropriate* caring roles. Disabled Parents Network is calling for a constructive dialogue involving disabled parents, policy makers, service providers politicians, researchers and relevant voluntary organisations, to re examine the issue of 'young carers' and support for disabled adults in their role as parents and determine the most productive way forward.

The assumption under pinning much current practice is that the interests of disabled parents are in conflict with those of their children. Services frequently start out from the perspective that children of disabled parents should be seen as 'in need' or 'at risk'. Services that have the effect of separating children from their parents (whether in the short or long term) or propel children into inappropriate family roles, i.e. that of so called 'Young Carers', without addressing the support needs of disabled adults in their parenting role, undermine the family lives of disabled people. In reality, the rights of disabled adults to found families and live as other families and the rights of children to live in families that provide for their needs as children are entirely compatible. The needs of children are best met when disabled parents support needs are acknowledged assessed, facilitated and regularly reviewed. This is in line with the Human Rights Act, Article 8 that upholds the right to family life.

The recent Social Services Inspectorate Inspection into services to support disabled adults in their parenting role suggests that the development of services to 'Young Carers' has to an extent happened in place of recognising the rights and service needs of disabled adults in their role as parents. This has led to skewed development of policy and practise. Whilst recognising the problem, the Inspectorate's Report 'A Jigsaw of Services' does perhaps not go far enough in calling for a re-examination of existing policy and practise in this area.

Such a re-examination is necessary for a number of reasons:

The main focus of legislators, policy makers and service providers has been the needs of young carers rather than the support issues facing disabled people as parents.

There is a great deal of specific information based on research studies in relation to 'Young Carers' and very little in relation to providing appropriate support to disabled adults in their parenting role, with the result that support for young carers has become the lead issue.

Dedicated support projects, research teams and workers in both the statutory and voluntary sectors inevitably have an interest in the continuation and development of the 'Young Carers' sector.

It is comparatively easy to acquire funding and support for 'young carers' who are seen as brave and commendable, as opposed to disabled parents who are frequently on the receiving end of judgements and disapproval.

The majority of social services departments have developed policies and strategies in relation to 'Young Carers' whilst only a handful of social services departments have any agreed strategy in relation to supporting disabled adults in their parenting role. Where both exist they are not necessarily co-ordinated and may even be in conflict.

The Social Services Inspectorate report 'A Jigsaw of Services' {DH April 2000] found that disabled adults' parenting needs are not being routinely assessed by social services departments. Services have developed in an unconscious, piecemeal fashion with child care and 'young carers' issues frequently leading the process of assessment and service delivery, policy making, training and voluntary sector input.

Treating support for families in which one or both parents are disabled as a children's issue is a back to front approach that has had a number of adverse consequences for the families of disabled people:

Resources and attention (fuelled by media support and interest) have gone into supporting "Young Carers" to continue in inappropriate family roles rather than addressing the core issue of providing support for the disabled adults who have both the right and the responsibility to care for those children.

Disabled parents report that their children have been forced into the role of 'young carers' because this was the only way to access support from their local social services department.

Where support is seen as a child care issue, child protection issues are always present as a consideration. This inevitably affects the approach adopted by social workers and the ongoing relationship between parents and service providers.

Where there is no identification that a child is either 'in need' or 'at risk', services to support disabled adults in their parenting role may be withheld.

The fact that services to children are not charged whilst those to parents are, creates an additional barrier to providing services in a manner that is supportive of disabled adults in their parenting role.

Best practise within social services departments would suggest that the parenting needs of disabled adults should be routinely identified and assessed whenever a disabled adult's needs are assessed. Where the initial approach is via children's services, or where a young person has been undertaking caring responsibilities, joint assessments should be carried out that take each family member's needs into account. Unless specific child protection or child care concerns dictate otherwise the lead should be taken by adult services [See separate paper produced by Disabled Parents Network outlining sample protocol for use by social services departments].

There is an urgent need to foster joined up thinking and working partnerships in this area. In the voluntary sector it is essential that any initiatives taken by 'Young Carers' support organisations and projects should be informed by the views of disabled parents and their organisations; not as an after-thought or add-on but as a lead perspective, as would be normal practice in any other area of service provision.

This is in line with a view of children's rights that sees these rights as being met most appropriately within the context of the family, through supporting parents to fulfil their responsibilities. Service structures and projects that develop services to young carers rather than parents in effect undermine the parenting role of disabled people and parents of disabled children and perpetuate the known social disadvantages to young people caught up in inappropriate* caring roles.

*The term 'inappropriate caring' is used to denote tasks that young people are obliged to carry out in the absence of acceptable alternative sources of support, that either they or their parents, or both, consider have adverse physical or social consequences. Naturally there are many caring tasks that family members carry out for each other that are an appropriate part of family life.

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last updated: 08 Jun 07

tags : Resources Young Carers

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