A man with Down’s syndrome and speech difficulties rows with his mother who is struggling to care for him.

A man with Down’s syndrome and speech difficulties rows with his mother who is struggling to care for him. Our panel advises

Case study
Names have been changed

Situation: Grant Harrison is a 22-year-old man with Down’s syndrome and limited verbal communication – often relying on noises and pointing. He lives with his mother, Maria, and brother, Louie, 16, and sister, Lola, 14, in the family home. His father is serving a prison sentence for fraud. Grant needs help in all aspects of daily living and receives four hours a day support from a care provider. He also attends a day service twice a week. Children and families workers from social services have in the past been involved with the family – mainly over parenting concerns – serving only to cause Maria to harbour mistrust.

Problem: Maria has problems with anxiety and panic attacks. It is thought she may also have minor learning difficulties. Nobody questions her love for her children but she struggles to care for Grant. Louie and Lola are resilient and adept at looking after themselves. If Grant shouts or pushes Maria – her response is to shout or push back. “He gives it – he should take it” is her argument. The day service had become concerned about the way Grant was arriving at the centre – often in the same clothes, unwashed and apparently neglected. A learning difficulties social worker – adult services had not been involved with the family before – has called a couple of times but Maria won’t let in anyone from “scummy services”.

Practice panel: Learning difficulties team, Bath and North East Somerset (Banes)

Panel responses
Janet Robinson – Student social worker
The disabled children’s team and day services could provide information about Grant’s history enabling the social worker to identify when reviews have taken place and when the current care package began. It is not clear who set up the day services but this is likely to have been an adult or transition social worker.

Grant is receiving services to assist his daily living skills. The social worker needs to find out which care organisations are involved, what support is being provided and at what time. Perhaps changes need to be made to the service provided. Action needs to be taken to respond to the concerns of the day services that Grant is arriving at the centre appearing neglected. Further investigation may reveal that Grant is reluctant to participate in daily living skills. A referral to an occupational therapist may provide further assessment of his functioning.

The social worker should acknowledge Maria’s reluctance to engage with social services and should act sensitively and with regard to her feelings. If Maria is resolute that she does not want to meet the social worker, the worker could meet Grant at the day services to identify his needs in accordance with the Fair Access to Care Services eligibility criteria.

As well as offering Grant an outcome-focused community care assessment, Maria should be offered a carer’s assessment. If Maria is reluctant to have a carer’s assessment she could be linked to carers groups which may help to relieve some of her anxieties and sustain the family unit. In addition to this the family may like information about the Down’s Syndrome Association

A benefit check could establish whether the family is receiving the benefits to which it is entitled. This could lead to carers allowance being awarded.

The community care assessment would identify whether Grant requires more activities during the week. This could take the form of directly commissioned services, direct payments or an individualised budget. Outreach, respite services or holidays could assist Grant and alleviate Maria’s caring role.

Andrew Luff – Clinical lead nurse, community learning difficultiesteams, Banes primary care trust
This family would benefit from a strategy involving the community learning difficulties team and the children and families team that addresses their respective Protection of Vulnerable Adults and Children in Need responsibilities.

An initial focus would be to establish a trusting and sustainable relationship with Maria. Research highlights the isolation, stress and social disadvantage faced by parents with learning difficulties experience.(1) It is not clear what amount of assistance the father provided, but it’s likely his absence will result in considerable emotional and psychological distress to the whole family. Maria’s anxiety and panic attacks may be a symptom of her sense of loss and isolation.

It also appears that Maria needs additional skilled support and guidance in looking after Grant. His behaviour difficulties can be interpreted as a problem of communication and resultant feelings of frustration.

The Valuing People white paper emphasises the importance of enabling people with learning difficulties to have as much choice and control as possible over their lives through advocacy and a person-centred approach to planning the services and support they need.

A referral to a speech and language therapist for a communication assessment could provide a structured approach to helping Grant participate in the development of a person-centred plan. I would recommend Maria be offered a chance of guidance and training in establishing a total communication approach.

The family should be helped to identify effective networks of support. The Disabled Parents Network can provide information, a telephone helpline and resources to support disabled parents. Being able to meet other parents experiencing similar difficulties can also be an empowering influence. In Bath, a Parents First group, independent of statutory services, has been established to offer such assistance and promote peer networking.

(1) Beth Tarleton et al, Finding the Right Support? A Review of Issues and Positive Practice in Supporting Parents with Learning Difficulties and their Children, The Baring Foundation, 2006

User view
Grant is telling us lots of things. He’s telling us that things aren’t right and that he isn’t being cared for properly, writes Adele Medhurst. If Grant does receive support at home, then whoever is paying for this should be checking that the agency carer is doing what they say they are doing.

If Grant is turning up to the centre appearing uncared for, the carer could have some useful insight into why. I would also want to know how this support was arranged without a learning difficulties social worker carrying out an assessment of Grant’s daily support needs. And how is it being monitored now?

I think that the local authority needs to hold a vulnerable adults strategy meeting to decide what to do, perhaps even involving children and families’ workers too.

Has anyone asked Grant what is wrong? He may not communicate using speech but he is communicating lots of things. Does the day service have speech and language therapy available? If not, a speech and language therapist could find out from Grant himself what he would like to change. This might lead to him feeling less frustrated. Grant’s pushing of Maria is trying to tell her something. If Maria is stressed, she might not be in the best place to listen.

We know that Grant has difficulty expressing himself but we have no idea about how good he is at understanding – what my social worker would call “his receptive skills”. That would be worth checking out.

What is happening to Louie and Lola? How are they getting on at school? Are they going to school? If the school has a teacher responsible for social inclusion they could be asked to offer support to them both.

It’s a shame that a family who so need support are so suspicious of the involvement of social services that might be best placed to help them. Every member of this family needs support and Grant is the person who is most clearly telling us what is wrong. Perhaps the day service can set up a meeting with Maria to start the dialogue. If Grant doesn’t have an advocate perhaps this would be useful too.

Assistant chief constable John Broughton of Essex police recently spoke at a Voice UK conference about vulnerable adults. Quoting another officer, he said: “At the very worst time of their lives the very least we can offer is our very best.”

A useful thing to remember when families are in crisis.

Adele Medhurst is a volunteer at Voice UK, a national learning difficulties charity