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