Clash of Expectations

CASE STUDY

The names of the service users have been changed

SITUATION: Georgia MacNamara is a four-year-old
girl with physical disabilities and some learning difficulties who
lives with her parents, Tommy and Linda. She has a blood disease
which requires frequent transfusions and the use of oxygen. She is
also epileptic and has problems swallowing. Her weak hips and
having one leg shorter than the other make it difficult for Georgia
to get about. She was supported at home with a complex care package
and her care was also shared by her grandmother, who lived nearby
and is a retired children’s nurse.
PROBLEM: Tommy has been appointed to a new
executive job which has caused the family to move away. With the
loss of help from her grandmother, Georgia’s needs have increased.
In addition the new local authority is not willing to pay for the
extensive care the family is demanding – especially as Linda also
wants to be able to work part-time at least – in order to have a
life away from the family home. The contribution required by the
MacNamaras would in essence take up more than Tommy’s pay increase
thereby making them worse off than before. Also, the local village
primary school is reluctant to take Georgia because of her needs –
but her parents are adamant that she should attend mainstream
school.

Panel Responses
Jill Thorburn
The new local authority has a legal responsibility to
pursue an assessment of Georgia’s needs rather than dismiss her
family’s requests for funding of a support package out of hand. The
local authority’s remit is to enable disabled children, young
people and their families to lead fulfilling lives within their own
communities, and to access the same opportunities as all
children.

Workers should consider how best to promote Georgia’s opportunities
so that she can have access to universal services alongside the
specialist services she requires. A child in need assessment will
focus on Georgia’s particular needs, but it will also identify the
needs of her siblings and her carers.

The green paper Every Child Matters, the national service framework
for children and the Disability Discrimination Bill are visible
evidence that the needs of disabled children have now been
recognised, offering promises of better financial and practical
support.

In order to provide a suitable community-based service that is
sensitive and which promotes her potential, multi-agency partners
from health, education, housing and social services should judge
the complexity of Georgia’s needs and consider how best they can
provide quality life experiences for her. Indeed, consideration of
a joint-funded care package could be best.

The parents might consider direct payments to employ a person to
support and care for Georgia as a day carer, or a sitter or to
support her at a community activity. They can use direct payments
to buy into a local service, such as a short breaks service, a
sitter service or an after-school club.

The parents’ expectation that Georgia attends her local primary
school should be given every support. The local education authority
has a special educational needs code of practice. The parents can
liaise or seek advice with someone who is independent and knows
about special educational needs. This help is available from the
local parent partnership service for national or local voluntary
organisations

Additionally, the Carers and Disabled Children Act 2000 and Carers
(Equal Opportunities) Act 2004 insist that carers’ assessments
consider leisure, training and work activities and provides for
co-operation between local authorities and other bodies to achieve
this.

Vince Bartley
In Liverpool, for example, Georgia would not be considered
for residential short-term breaks because she is so young. It is
the council’s policy that children who need support of any
intensity should have that support delivered within the family.
This maintains the continuity of care for the young person with the
family as the primary care givers.

It also establishes for the family Liverpool’s expectation that
they will remain the primary care givers, with support from a menu
of services as required. So it is our responsibility to help and
support families in need in their own homes and communities, and to
seek a residential option only when all other avenues are
unavailable or inappropriate.

In a typical case, a joint assessment would be undertaken by social
work staff and health colleagues. Georgia has identified needs that
will require input from local health services on a number of
levels, and these need to be interwoven with Georgia’s social care
needs in order to plan a holistic package of support for all
concerned. Georgia’s case has a wider aspect to it as her parents
wish her to remain in mainstream education. The package designed
would need to embrace this support as well.

Within Liverpool, these three arms of health, education and social
services have established systems and protocols, and are used to
designing packages together. Education and social services are now
structurally and practically integrated to enable this seamless
approach.

Various community support options exist for integrated play, either
at an existing base or to give Georgia access to mainstream
community facilities. A short-term breaks option may be explored
through our Partner Families scheme, which seeks to encourage the
wider community to take an active role in the development and
protection of its youth by linking to one or more families in need
to provide short-term breaks for young people.

The services put in place to support young people are specifically
targeted to the young people, as their development and welfare is
our principal objective. However, it is undeniable that this
support needs to have a positive impact on the parents, carers and
wider family as without their commitment, resilience and strength,
the demands in terms of services and resources would be
greater.

User View

In order for Georgia to get the best start in life, it is essential
she is properly supported by her local authority and family. While
ideally one would like to see a comprehensive care package,
tailored to the needs of the MacNamaras, provided through the local
children’s services department, this does not appear to be an
option, writes Mark Houston.

The local authority feels Linda and Tommy, as parents, should spend
a reasonable amount of time and effort supporting Georgia and
should contribute to child care costs in the same way that parents
of able-bodied children do.

The best way forward would be a compromise, where the MacNamaras
would still receive a fairly complex care package, but one of a
slightly lower value than the one they are asking for. The social
worker should discuss its implications with Tommy and Linda, and
then negotiate the arrangements with them, explaining why the
department is unable to give them the package they are
demanding.

I fully sympathise with Linda wanting to work. She clearly
appreciates time away from the family home and the daily problems
she has to deal with, plus the desire to earn money herself along
with her desire to widen her own horizons.

However, realistically, this may not be compatible with the care
package that the family are likely to receive. Once Georgia starts
school, Linda could possibly get a job that fits around school
hours, thus reducing the level of support that they would require
during the evenings, weekends and school holidays as one of her
parents, or both, could be home with her.

With regard to schooling, I fully appreciate the MacNamaras’ wishes
for Georgia to be educated in a mainstream school. However, many
schools are unable to cater for this level of complex needs without
significantly more funding, staff and training. It is quite
probable that the local primary school genuinely feels they can not
fully cater for Georgia.

It could be disadvantageous for Georgia to start school and later
have to be moved. Of course, if the care package were to meet all
these requirements, mainstream schooling could be the best option.
This would need to be one of the main factors considered when
designing the care package. The head teacher, along with officers
from the local children’s services department, meet Linda and Tommy
to discuss the issues and explain why they feel it wrong for
Georgia to attend the school at present.

Mark Houston is a care leaver