Campaigns ----- Home Page Index
The VIA office receives many calls for help and information. There has been a recent increase in the number of calls from people seeking help involving parents with learning difficulties and their children. It was not so very long ago that the law allowed certain women to be locked up in mental handicap hospitals for having sex, being labeled as "moral defectives". Some are still there, but times have changed (if you disregard all the recent stories of sterilization without people's consent) and it is now more widely recognized that having a learning difficulty does not automatically mean that you are asexual or an abuser of small children. Being in a relationship is a rather special but also rather ordinary occurrence and, instead of condemnation, acceptance and, if needed, appropriate support and teaching is now far more widely available. As a consequence many more couples with learning difficulties are having sex, living together, getting married and also having children and again like many other couples not necessarily in that order or always with a partner of the opposite sex.
Several VIA members have developed a special interest and expertise in this area. Andrew Holman, a VIA project worker, regularly acts as an independent expert in court hearings for parents with learning difficulties. An expert witness is in a position to offer the court evidence based upon experience and knowledge about the subject area and not just the case in hand, they are able, therefore, to talk more widely about the issues of discrimination and support for parents with learning difficulties which will hopefully enable a more informed decision. VIA believes, however, that early intervention and appropriate support would enable many parents with learning difficulties to successfully care for their children and so stop the need for care orders.
A starting point for any work is that it must always be in the best interests of the children. We have met far too many children who have suffered at the hands of parents and ended up damaged, both physically and mentally, it must be acknowledged that their are some people with learning difficulties who will not make "good enough" parents, whatever the level and quality of support. Equally there are many who would make excellent parents given the opportunity. Research in the area is limited. We are only just starting to see good quality parents support services such as the special parenting service set up by Sue McGaw in Cornwall, but the results so far are encouraging. The qualities needed in a service are becoming clearer, it is skilled work but it must be easier to support the natural parents than to have to find alternatives which are going to be successful. An excellent guide is available from the NCT ParentAbility group and in the Booth's book Parenting under Pressure.
With a family where the parents have learning difficulties there are two main groups of professionals that need to be included. The first is the usual support service for the prospective parents perhaps the learning disability team, for it is they who may well know and already be supporting the parents. The second group is the child health profession, midwives, health visitors etc.
It is an area where support services will have to come of age and take their responsibilities to people seriously. There are services which have encouraged sexual activity without the necessary regard for safety, abuse and responsibility. If a couple are going to have children and need support it is going to need to be reliable, consistent, available when it is required, it will probably have to be particularly skilled in child care as well - all areas where some services have found difficulty proving themselves. It is no good sending in unknown agency staff when a member of staff is off sick or providing the service which is convenient for themselves or workers rather than the family. If you need help with a screaming baby at 2.00 in the morning you need help and that has got to be from someone who knows the family, knows what they are doing, is available and who will act appropriately to support the family.
Child health professionals may not be very experienced with people with learning difficulties but we all need to work together if support is going to work. Health input is essential in monitoring and promoting the well being of babies and young children and learning disability services have the teaching and support structures often required. It is rare to find the level of co-operation needed between these groups to avoid confusing and contradictory messages to the parents. Clearly the fewer people involved the better but it is difficult to reduce the number and it can often be increased if a child protection team is also involved. Child protection have family support money and the child may be on the "at risk register".
Much can go wrong and often does, with claims of incompetence, discrimination and insensitivity commonplace, indeed there are expert child psychiatrists who regard it as neglect when leaving any child with a disabled parent! The Children Act guidance that parents should be treated as partners by local authorities is clearly not always being implemented in practice when those parents have a disability. Parents have a right to good assessments, a right to sensitive treatment and a right to appropriate support thus enabling and supporting them as parents and as a family. VIA is now involved with other disability groups who view the problem of appropriate support as a cross disability issue, not just for people with learning difficulties. The family mentioned earlier lost their fight to retain custody of their children. As the leader comment in Community Care (UK journal,19-26 January 1995) said -
"Once again, it seems, fear of the 'learning difficulties' label and what it might mean has weighed more with a local authority (and the legal system) than the principles of partnership that the children Act was supposed to entail ... Mr. and Mrs. Kingsley have lost their children, not primarily for what might have happened in the past, but for fear of what might happen in the future".
Campaigns ----- Home Page Index