thwarted by her mother?

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?