Background to the Research

• Despite a growing emphasis on user involvement amongst statutory and voluntary agencies in relation to the planning and delivery of services in NI, significant gaps remain between service providers and users. The FIG was established in 1997 in order to raise issues and awareness on behalf of families who have children with physical and sensory disabilities. One of the central issues raised by parents and by FIG is a need of service providers to treat parents as professional partners in the provision of services for their children.
  

Research Approach

• In order to explore key issues relating to the role of agencies and families in service planning and provision FIG, in conjunction with FHSST, set up a series of seminars (between November 1999-April 2000) and a Conference in May 2000 at Creggan Day Centre.
  

Main Findings

Comments from a community Health Visitor - FHSST

• A health-care professional is expected to have knowledge and control, and to remain objective, these expectations come from the health visitor herself, her boss and from the parents.
• Barriers of fear and suspicion exist on the side of both the professional and the parents. It can be daunting for a health visitor working with a family with a child with a disability, especially where the health visitor has little or no experience of disability. Parents may be suspicious of the motives and approach of the health visitor.

Comments from a manager, Family Support Services - FHSST

• The Trust has a duty under the Children Order to provide social services for children in need and their families and, for the first time in this legislation, children with a disability are regarded as children first.
• Although a range of services are available in order that children with a disability have as normal life as possible, services are fragmented and children with disabilities can be marginalized as having a lower priority in a climate of growing and competing demands for services. In this context, it may be prudent to establish a Children's Directorate within the Trust.

Comments from a Director of Carers Association (NI)

• Carers are partner professionals, with experience and knowledge that has developed over time. Their knowledge of the unique needs of each cared for person is invaluable.
• The importance of support services for carers, in the form of statutory and voluntary agencies, family and friends cannot be over-emphasised.

Conclusions

• A key worker needs to be appointed from the time of the child's diagnosis.
• A care plan needs to be initiated and Derry needs more specialist clinics.
• Parents are not treated with respect, not listened to and not treated as professionals.
• There is a need for greater co-ordination of services and organisations need to work together.
• There is a need for better childcare facilities with child minders specially trained to work with children with disabilities.
• There is too much pressure on the voluntary sector when the statutory services cannot provide services due to lack of resources.
• Social workers need to have specific knowledge of disabilities and have more time to listen to children.
• More effort should be made to ensure that service providers and families share knowledge and expertise in order to enhance the lives of children with disabilities.