Background to the Research

• FIG was established in 1997 in order to raise issues concerning families who have children with physical and/or sensory disabilities. It seeks to support families and to present the family view of disability to voluntary and statutory organisations in order to influence policy and practice in relation to service provision.
  

Research Approach

• The report presents an overview of the key issues faced by the parents of children with disabilities and by the children themselves. It outlines the journey of parents and children from diagnosis to the search for information and services, and assesses the response of various health and welfare professionals to the needs of families and their children.

Main Findings

• Current researchers are attempting to engage parents and families in their research and the use of action research is helping to move this process forward. Whilst academic research is very welcome, families themselves are an underused resource in terms of their expertise concerning the needs of children with disabilities.
• Parents say that they have to fight for services, often this fight is with the very agencies and professions charged with helping them access and secure services. The procedures of various government agencies such as health and social services, education and social security are complex and bureaucratic. Parents are often treated as passive receivers of services rather than as fellow professionals.
• The relationship between parents and those who work with them often breaks down in the period just after diagnosis. At this emotive time there is a lack of support, access to information and counselling for parents. The diagnosis affects the family as a whole and each individual comes to terms with it in their own way and in their own time. The complexity of this process is often under-estimated by service providers.
• Those planning and providing services to families have, until recently, failed to involve families. Those in the statutory sector often consult families but without any obligation to act on the families' input. Yet involvement of the family from an early stage can and does lead to a more effective and efficient use of services.
• Appointments offer important opportunities for families to access other services and gain information
• In many cases families must fit in with the timetable and venues of service providers regardless of the strain it places on the families.
• Choices are based on the information available and for a lot of families information is not easily accessible or understood.
• Time-out or respite care is important to families, yet it's availability is patchy, inflexible and ad hoc. Families need to be asked what type of respite care they would like and under what conditions.
• Access/regress from buildings to public buildings remains an issue in need of attention. Children and people with disabilities need to be viewed and treated as people first.
• Not all children have a service plan outlining what type of services they are going to get and when. The co-ordination of services across the statutory and voluntary services is only just beginning and needs to speed up.
• Education is a key issue for many parents and they need time and information in order that they can assess the options and work out what is the best choice for their child. In many cases there is inadequate provision to meet the needs of children with disabilities. Clearer information, guidance and better choices are needed.
• The housing needs of children with disabilities and their families can be complex and changes over-time. The Disabled Facilities Grant is means-tested and many families cannot afford the contribution they are assessed to pay.
• Many different professionals are involved with the family - especially around the time of diagnosis - the appointment of a key worker to co-ordinate services would assist the family. The key worker could liase between the family and other professionals.
• The needs of parents and carers around education, training and development are often ignored or overlooked. Existing courses are often not tailored to the needs of families and the criteria for certain benefits such as Invalid Care Allowance prevent people from accessing courses.