A young disabled woman is being looked after at home by her elderly parents. But can they cope for much longer?
The names of the service user and her family have been changed
Situation: Tracy Fuller, 36, has a complete paralysis of her legs and lower abdomen. She has been cared for by her parents, Jean and Roger, all her life. Both are in their late 60s. Roger worked but Jean remained at home with Tracy, whose brother, Martin, 35, lives about 40 miles away. The Fullers also provide care to Roger’s mother, Irene, 91, who lives in very sheltered housing.
Problem: The family has always prided itself about not needing outside help. Tracy, with the exception of youth club nights twice a week, run by the local church, does everything with Jean or the family. Last year Jean was diagnosed with cancer and had a double mastectomy. Also, Martin’s wife recently left him and he is caring for his four children. To help out, two of them are staying at the Fullers’ house on Thursday and Friday and all four at weekends. Roger is at his wits’ end. Recuperating at home, Jean didn’t have the strength to climb in or out of the bath. Roger, swallowing his pride, contacted social services. A worker agreed that Jean needed a hoist but told the Fullers there was no budget and gave them a number to call to buy one for themselves (at a cost of £450). However, the worker noticed that Tracy seemed to have nothing to do and contacted the physical disabilities team – who had no record of her. When they called the Fullers, they received very short shrift.
Practice Panel – Physical Disabilities , Derbyshire
To carry out assessments the care manager will need to build up trust and engage with the family. The family need information on crucial health, social and voluntary services, so they know on whom to call when they need help. They should also be told that they will have access to a co-ordinated range of services as outcomes-focused assessments should consider all aspects of a person.
Carrying out separate carer’s assessments with Jean and Roger and looking at their individual needs would enable them to explore the best way forward and try to find practical solutions to free up their time. Not all carers are aware of available services and networks, and Jean and Roger are effectively fostering their own grandchildren at weekends.
The care manager would need to carry out a community care assessment with Tracy. Is Tracy able to communicate her needs and wishes and should the need for an advocate to be involved be explored? What are Tracy’s skills and is her independence being promoted and encouraged?
When the time is right and trust gained, there can be discussions about short breaks and day care options, outreach support, independent living and the direct payment scheme. A referral could also be made to the occupational therapist for a specialist assessment. An outcome-focused assessment will also help Tracy plan for the future.
The Commission for Social Care Inspection warns that support is urgently needed for the many unpaid carers in England and has emphasised that the social care system is reliant on this group. Keeping a child in the family requires adequate funding and sound support. A benefits check with the family will establish whether they are claiming the correct benefits at the right levels.
The National Family and Parenting Institute supports parents in bringing up their children, promotes the well-being of families and to aims to make society more family-friendly. It works to raise awareness about the importance of relationships and to change the climate of opinion so that people find it easier to find help and realise that the best solutions are not always the most expensive.
Once the care manager has identified practical difficulties that restrict the day-to-day independence for the Fullers, the environmental hazards and obstacles that cause disability for Jean, Tracy and Irene should be assessed, and where possible removed.
Jean’s cancer has led to the family’s first contact with social services for a long time. Breast surgery has made it impossible for her to manage the bath. Why Jean has not been issued with a bath lift is a matter for speculation. Perhaps Jean is able to shower to maintain her personal hygiene but prefers to bathe.
If this is the case, Jean’s request for help with bathing has probably fallen into one of the Fair Access to Care (eligibility criteria) bands that doesn’t trigger a service from her social services department. We can’t meet every need but a full and proper explanation always helps people accept a refusal of service.
The Fullers are proud to have managed without support from social services. They expect to support and care for each other. If I was their occupational therapist I would listen closely to what each member of the family says about their needs. After all, the Fullers are very much the experts here.
Caring for Tracy is an important part of life for the Fuller family. Does Tracy want to be more independent? It could relieve Jean and Roger of some chores but how would they feel about losing the responsibilities of caring? It’s a sensitive subject but an occupational therapy assessment should be offered. Equipment or adaptations or both could be helpful. Perhaps Tracy might want to try independent living.
Jean and Roger are also supporting Irene. Is this a source of stress or are they able to cope? An occupational therapy assessment should be offered to Irene. It would be helpful to identify the caring tasks that require physical effort. How does Jean feel about the practical help she’s giving Irene? Would equipment or a housing adaptation allow Irene to be more independent and make things easier for Jean?
With the right help from social services, the Fullers can continue to support each other and be proud of their family’s ability to cope.
The Fuller family have been self-sufficient and cohesive in looking after each other over many years. They have every right to be proud of themselves as a family for the way that they have successfully dealt with severe disability, life-threatening illness, incapacity and family rift, and all probably at great personal cost, writes Simon Heng.
They have realised that the changing circumstances have made it impossible to cope without help, even though this might seem like failure on their part. They may feel that asking for assistance is shameful, and an admission of defeat. For them to be refused the kind of assistance they asked for – equipment to enable Jean to bathe – would probably reinforce their view that they only have themselves to rely on.
For the worker to refer Tracy to the physical disabilities team without consulting the family – they did not ask for help with Tracy – must seem like an unwelcome intrusion, with the perceived threat that the authorities will challenge or break the family’s independence, maybe even breaking up the family itself. Personally, Tracy might benefit in the long run from contact with adult services, both in terms of her personal care (her main carer, Jean, is finding it difficult enough to look after herself, let alone her daughter) and in developing a more active, purposeful life. This doesn’t have to jeopardise the family, and might help them to carry on together successfully.
That Tracy’s brother, Martin, and his four children are having to commute in order to help out, when they themselves are going through difficult times, makes it even more important that Jean, Roger and Tracy are all made aware of what help may be available to each of them, and as such should be offered individual assessments. It needs to be made clear that this will all be done so that they can continue to thrive and keep their independence.
The family’s self-reliance has, ironically, handicapped them. Unlike some families with disabled children, the Fuller family aren’t experienced in using the system to their advantage, as they have every right to do. And rather than seeing assistance as offering them opportunities to be more independent, my guess is that they see it as failure.
By coping without knowing what’s available, they may have been inadvertently denying Tracy opportunities for a social life and perhaps work.
Simon Heng is physically disabled and works on service user issues