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

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