News

Our multidisciplinary panel considers the case of a woman whose mother does not want her to move out and live independently.

practice panel: Health and disability team, Royal Borough of Kingston-upon-Thames, London

CASE study

Situation: Susan Hill (not her real name) is 21 and has cerebral palsy. She went to a special needs school then a specialist college; both were residential. She has returned to live with her lone parent mother and two siblings but wants to live independently.

problem: Susan is bright and capable and wants further education but needs support for all of her personal care and daily living tasks. Mary Nalty started working with Susan before she left college and shortly after she left had found her some accommodation. Following a full assessment, Nalty had a care plan arranged to deliver 14 hours of daytime help and a 24-hour community alarm service. Nalty showed Susan and her mother the flat. Susan wished to move in but her mother raised many safety objections and insisted 24-hour care was needed. Susan was heavily influenced by her mother (who is a capable, independent-minded person), so stayed at home. But this house couldn't be adapted. So while Susan lives there the effects of her disability are more pronounced - and she loses her motivation to live independently. When Susan meets Nalty she regains a sense of her abilities and desire to live independently. Nalty has tried to tell her mother the disabling effects of Susan living at home, or moving into a flat with 24-hour care, but continues to meet strong resistance. She fears Susan's wishes will be smothered by her mother's concerns.

Mary Nalty is a care manager in a physical disabilities team in Greenwich

user view

The issues confronting Susan Hill and her mother are common and can lead to a great deal of frustration for the disabled person and much fear and unhappiness for the mother.

Susan's mother may have unexpressed grief and needless guilt stemming from Susan's birth, which may be contributing to her control over Susan. Often, the disabled person has their life manipulated by family, friends and professionals. Susan has certainly had the common experience of segregation and social isolation at school and college. She has missed out on many aspects of family life from an early age.

The study omits to tell us whether the other children are younger or older than Susan but it would be interesting to learn of their expectations and the mother's expectations for their lives. Despite the isolation, Susan has a positive sense of self and identity and in the appropriate setting is able to assert her needs. Why should she be discriminated against and oppressed purely on the grounds of being a disabled woman?

Mary Nalty has obviously been a supportive influence, and given Susan advice from which she has been able to make decisions, but this work has been undermined by the dominant mother. Susan has the right to have her needs met. Not to be able to experience freedom at home or have her personal care needs met or make her own choices is an abuse of Susan's human and civil rights. Her mother is a capable, independent-minded woman - but so is her daughter, and yet Susan's aspirations are being thwarted!

Susan would be helped by getting direct payments, by having an independent advocate, and by the opportunity to meet other young disabled people who are living independently in their own homes and who attend college or who work. This way, Susan would have her needs met flexibly and could go to college and socialise.

She has the advantage of living in Greenwich, which has a well-developed and pro-active Centre for Independent Living (CIL), controlled, like all CILs, by disabled people. Susan may wish to explore independent living issues and find out about direct payments. There is no mention of a carer's assessment for the mother. This might give her the chance to open up about her real fears, which will probably focus on her own unmet needs.

Ann Macfarlane is a direct payments scheme user in Kingston-upon-Thames

panel responses

James Lampert

There is some information missing about the extent of Susan's physical impairment and her capabilities to carry out daily living activities. I think she may require assistance with transfers and mobility and I am unsure how she communicates. How she manages with these things will obviously have an impact on her safety and how she can get help if she needs it.

From the information provided, it is unclear what format the assessment took and who else was involved in the assessment process. For example, how much involvement was there from the college? Has Susan had the chance to be assessed in an independent living flat? If not, assessment at a residential placement with independent living flats could be arranged. How involved has Susan's mother been in the assessment process? Did she actively engage with the process or was it more a passive involvement?

You could offer a carers assessment to the mother, to find out how much help she is giving and in what form, and how she managed during school and college holidays. This would draw out her mother's safety fears.

I initially considered the option of the Independent Living Fund (ILF) to fund live-in 24-hour care. Being able to access the ILF depends on the costs of the current services she is receiving from social services (at least £200) and her own financial position. I concluded this will not boost Susan's independence and development. If 24-hour care is provided it might allay the mother's anxieties but also prove to her she was right all along. It could also impede Susan's development and lead to skill loss.

Susan could become dependent on carers, which could cause problems in the future if care is reduced.

Another approach might be to arrange for an outreach worker to see Susan at home to help maintain Susan's abilities and independent living skills and carry out further assessment. This might make it easier for Susan's mother to take part actively and see Susan's capabilities for herself. Alternatively, a programme under the supervision of an occupational therapist and physiotherapist could be instigated. The therapists could also work with Susan's mother to help put the safety concerns into perspective.

Sheila Hart

First of all, I would try to understand from Susan's mother what her anxieties are about safety. Are they founded? Is there any relevant history we need to know about? What was their relationship like before?

There are various ways of approaching work with Susan and her mother, some of which I outline below.

We know Susan has a desire to live independently, so I might begin to get Susan and her mother talking about planning for the future and any fears that they have. I would continue to help Susan and her mother to share concerns, separately and together.

It might help to talk to Susan's mother about the social model of disability (although without the use of jargon!) to enable her to understand that Susan is not her helpless, ill child, but a young, capable adult.

I would like to give Susan the opportunity to work with an advocate. If there are communication needs (Makaton, for example) a suitably qualified advocate should be arranged. The advocate might be able to negotiate more successfully with her mother than Susan alone.

Assertiveness training could be offered to Susan to enable her to feel confident communicating her wishes to her mother.

This will also benefit her in the longer term with other aspects of independent living.

A more formal approach may be a referral to a psychologist who would work with Susan and her mother to reduce anxieties and fears about living independently. We have had a similar case ourselves of an interdependent mother/daughter relationship where this has worked well, although it has taken a long while for changes to take place. Family sessions could take place with the care manager and psychologist.

On a practical level, if you wanted to consider using supported housing as a stepping-stone to full independence, you could take Susan and her mother to visit such a scheme to satisfy her mother's anxieties. For example, John Grooms Housing Association or Support & Housing Assistance for People with Disabilities.

Is it worth looking at putting Susan and her mother in touch with other people who have been through a similar process?