Supporting parents with learning difficulties

The following article is taken from a paper written by Paula Edmonson and Evelyn Scnelder of the Circles Network, Bristol, England, for the European Commission ‘Achievin inclusion through networks of support’, Preparatory actions to prevent and combat social exclusion (2000).

Using Circles of Support

‘A Circle generates power’ (Wertheimer (ed) 1995).

There are people in the community who want to be part of the life of others. They can often be found in ordinary settings in the community such as play schools, nursery, mother and toddler groups and colleges. By using a relationship map we can identify others the parent knows, no matter how casually and we may find they know a lot of people. The parent can invite them into their circle of support.

Trained facilitators work with the circle to give the focus person the help they need and want to work towards their dreams and wishes. For the first time perhaps others are listening to what the parent wants. People in the circle can draw in friends from their own circles and so a network forms. Circles of support need not be confined to the parent. They can be formed for the child(ren) with other children at school as well. Facilitators can enlist the support of teachers and class assistants.

Circles need not always be personally attended. One, child has a circle, which includes people all over the world communicating over the internet and by fax. For another woman a telephone circle of support has been set up for times when things are overwhelming. Having friends to talk to helps her avoid suicide attempts. Another woman gained the confidence to enable her to speak up in a review, something she had never done before.

A circle of support helped a woman with learning difficulties in ways that could never have been envisaged when it first started. This woman lives in her own flat. She works in an office and is a valued contributor to the work there. She spoke at a European conference in Portugal despite never having travelled abroad before and has since travelled to Washington, USA, meeting presidential representatives and representing disabled people in the UK. More invitations to speak arrived and this year she travelled to Seattle, speaking to an audience of 1600 people there. As well as raising her self-confidence and self-esteem she is able to put herself forward as an example for others as to what can be achieved.

‘Changes can come from the power of many, but only when the many come together to form that which is invincible - the power of one.’ (1998,Courteney).

Advocacy

Supporting parents supports children. An advocate can provide support in numerous ways - witness, buffer, voice, go-between, interpreter, listener, scribe, problem solver, fixer, conduit, sounding board, confidante, ally, sleuth, mentor, observer, mover and shaker’. (Booth and Booth, 1998). For one child and her mother, advocacy has led to agreement for conversions to their house. Previously this mother was struggling immensely in an uphill battle with the local authority. For another mother, advocacy is supporting her to move her son to a new school that is much nearer to home saving them both a long walk every morning.

Communication

Changing the usual format of meetings, statutory and court proceedings to include everyone involves preparation, clear accessible materials and minutes, contributions to the agenda, patience, allowing time to understand and consolidate what is being said and moves towards self advocacy. Work can be done to facilitate communication between all involved. For a parent supported by the project, being asked questions in a meeting is a daunting prospect. She finds herself confused and under pressure. By giving her time to think and allowing her to contribute to the agenda she is able to relax and say what she really feels. This in turn gives her more confidence and allows her to take more control in a meeting that has been set up for her.

Working together

All agencies must be co-ordinated and work together with each other and with the parent. Expectations need to be made explicit. The results of not working together mean confusion and mixed messages for parents and their children, adding to the frustration of managing and trying to meet the differing expectations of a large group of people. A situation which the strongest of parents would find difficult. By working together parents would feel there is a real team working for them and not against them.

Redefining independence

The current framework of thinking about independence for disabled people does not make sense in a climate of increased social isolation. What is more important is ‘independence’ in the form of control and inclusion, community networks, community building and advocacy from natural settings. Circles Network supports a retired parent who has a daughter of fifteen. Previously he was unable to collect his daughter in the evening because the home care staff would come anytime from 6pm onwards, to prepare him for bed. With direct payments he is able to arrange for evening support at a time that suits him and his daughter. Supporting this parent means supporting his daughter as well.

A paradigm shift

A paradigm shift is needed, changing professional styles of working from therapist/client to human/human. This will require professionals to relinquish the power they perceive they should have over the people they support, and to work outside the assumption that their job is to ‘fix’ the problem, to working alongside people with impairments, enabling them to achieve their own solutions in a situation of equal rights.

Balancing the cost

In the short term the removal of children from disabled parents is very costly but in emotional terms the cost is even higher.

The longer-term benefits of keeping families together have been found to include:

  • Reduction in the amount of paid support required being reduced as more natural support networks are formed.
  • Reduction in support from mainstream agencies.
  • Reduction in the need for and high cost of legal proceedings (this also includes the reduction in the cost to the legal aid system and time spent in preparation of assessments and reports for the court).
  • Reduction in suicides (threats and attempts) and arrests.
  • Elimination of a revolving door of mental health admissions.
  • The family stay together.
  • Removal of children from the child protection register and elimination of the need for regular child protection reviews.
  • Less house moves and children stay in school.
  • Family stability offering a good model for the next generation.

Whilst the immediate costs of supporting parents with learning difficulties may be high these have to be balanced against the long-term costs of separation and family breakdown.

For more information contact Circles Network, telephone 01788 816 671; website www.circlesnetwork.org.uk

 

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