News

Our multidisciplinary panel considers the case of a woman with learning difficulties unable to accept parenting responsibilities.

Case study

SITUATION: Sue Jones (not her real name) is a lone parent with mild learning difficulties; she has an eight-year-old who has a physical disability and a sensory impairment, and a six-year-old who possibly has attention deficit hyperactivity disorder; both children have mild learning difficulties.

PROBLEM: Eighteen months ago Jones was suspected of having MS, though was diagnosed with chronic stress. Since then she has requested and received extensive domiciliary and respite care support. She has demanded more support from health services for the children whom, she feels, have more pronounced disabilities than professionals have stated. For example, while she put pressure on a community paediatrician to make a diagnosis for her younger child of ADHD/Asperger's, staff at the child's school maintain that there is no evidence for this. She is now attempting to get this child placed out of county in a specialist residential school. As a consequence there are considerable emotional attachment problems between her and the children, not only because they have been sent away from their mother frequently for respite care purposes, but also because she has increasingly relinquished her parenting responsibilities. While social services have been trying to ensure that the children are "plugged into" mainstream inclusive activities, they are always struggling against the mother's desires. Support is gradually being withdrawn to encourage her to accept her parenting role. But it is clear that the children's interests are still in jeopardy.

Mike Dimond, team leader of a children with disabilities team, Bedfordshire social services.

Panel responses

Linda Walz
My primary focus would be on the mother, Sue Jones. I would want to assess fully the extent of her learning difficulty because of the implications this has for her understanding of the whole range of issues under discussion. The results of this and a possible speech and language therapy assessment should help inform the way all agencies work and communicate with her which will empower Jones to make informed choices.

I would also want to conduct a thorough assessment of her parenting skills, probably in conjunction with a community nurse and an occupational therapist, based on the Parent Assessment Manual.

Alternatively, I might suggest a residential placement for Jones and her children at a specialist parenting assessment centre as this would provide a supportive environment during this process.

I would like to explore with Jones what informal social and emotional support she receives. I would consider providing emotional support to Sue but also ensure that she has contact with her local carers network and perhaps that the children have contact with the young carers network.

I would like to be reassured that her possible multiple sclerosis and stress problems had been fully investigated and would recommend that a community nurse accompany her to relevant medical appointments to ensure access to psychiatry or neurology as appropriate.

I would want to develop close links with professionals in the children's services to clarify the extent and implications of the children's disabilities and be able to work jointly with them and Jones to ensure positive communication and interaction within the family.

The above assessments and interventions would help clarify what can realistically be expected of Jones, what specific areas she needs help with and what strengths she has which could be built on. This would form the basis of her person-centred plan which would determine the appropriate package of care for her and the children from child and adult services. This must, however, include the possibility that Jones really does not feel able to cope with the full responsibility of her parenting role, and alternative solutions would need to be found.

Mike MacCallam
Clearly, Sue Jones and her family are under a lot of stress. It's important that the agencies involved - education, health, social services - work together in a co-ordinated way to prevent any further deterioration in the family circumstances. The successful intervention and support from any single agency, either from adult or child services, is going to depend on a complementary approach from other professionals involved.

At the heart of this case is Jones's relationship with her children and her feelings towards them. In the midst of such a complex situation, it is important to ensure that Jones's family is centrally involved in the decision-making processes and allowed to exert some control over the choices that are made. To this end it is vital that Jones is given information about the range of options and their consequences in a manner which is appropriate to her level of understanding so that informed choices can be made. This may help Jones acknowledge some of her responsibilities as a parent.

In terms of planned support to Jones, we are not told whether or not there are other family members who can support her and work with the professional teams. While we cannot rely on other family members, we should consider what assistance we could provide to them if they wish to help. Extending the network of support, we would want to ensure that Jones is made aware of any existing local carers organisation, particularly those caring for disabled children.

Given the range of needs, variety of professionals involved and the long term need for support there is a clear role for an advocate both for the family and this would be a priority area of support to be addressed immediately. The specialist learning difficulties staff should also consider their role in supporting Jones to access "mainstream" services, ie around her continuing health needs, and those of her children.

Finally, there are many initiatives for supporting parents of disabled children proposed in the recent government white paper - Valuing People - A New Strategy For Learning Disability in the 21st Century.

Local services should look closely at these and consider what new opportunities may be presented for Jones and her children, and how they can maximise these.

User perspective

I just think that if you take all the respite care away that will be awful for all families with disabled children, writes Neil Shearn. If you take the social workers away, how will the children communicate with their mother?

These children are normal like us. They don't need to be pushed out of school because they are disabled; they're disabled, that's all, with learning difficulties.

If social services do take the care away it will be wrong. Sue Jones should see her MP and tell him that she wants equal rights for her children. I think it is wrong that they are taking services away and she should keep them.

All disabled children should be in normal schools. The school should be doing more to support the child. If disabled children are in school they should have special assistants in.

I feel angry that the school has been talking about disabled children behind their backs. I think their mother - if she's not been very well - she's not giving them the care; they need lots of care. She needs more services.

The mother should spend more time with them, but it is hard for her because she's got a learning difficulty. We have got learning difficulties and we can't look after children, so it must be hard for a disabled family. If my parents were disabled it would be hard for them too.

I have been in respite care and it is good for short breaks. It is important to give families a break. I think the children's relationship with their mum is quite rocky and going downhill because they don't see their mother everyday.

A social worker might be understanding about her because she's a disabled parent - but the doctor (community paediatrician) might not talk to her because she's disabled.

Sue should go to the Coalition of Disabled People and tell them about the school and what they have been saying. It must be very difficult for people who are disabled being parents.

Neil Shearn describes himself as disabled and attends the Connections Day Service, Bath and North East Somerset, where he is a member of the committee. His interests are advocacy and disabled people's rights. He helped set up the Connections Day Service Advocacy Office project, which has its own resources and is about to employ its first development worker.