Having a break: good practice in short breaks for families with children who have complex health needs and disabilities
What kinds of innovative short breaks are provided for families?
Short breaks are often thought about in terms of providing children with residential care, but in fact they include a much wider range of services. A short break can range from a few hours to several days. Parents and siblings may want to stay with the child, or the family may wish to take a break at home, particularly as this allows the child to continue seeing friends and stay in familiar surroundings. Providing such a wide range of services requires much greater flexibility than has traditionally been the case.
These are some of the different types of short break identified through this project.
Under Fives groups
These offer a two-hour break to parents while their children take part in a variety of activities adapted to suit their individual needs. (The Hamlet Centre Trust, Norwich)
Saturday play schemes
These are play schemes, much appreciated by parents, which offer, for example, crèche facilities or play groups over the long summer break. These take place in community leisure facilities and include a mix of children. Parents are able to use the facilities at reduced rates. (Orana Community Service, Northern Ireland)
Saturday play schemes are very popular. Families can come to the town centre and do their shopping and family activities while their disabled child is being cared for.Staff member, The Hamlet Centre Trust
Summer holiday play schemes
Separate schemes are run for children aged 3–8 years, 9–12 years and 13–18 years in the school summer holidays, and are suitable for children with a wide range of disabilities. Activities are planned to be age-appropriate and flexible enough to meet the needs of the children attending each day. A minibus takes groups of up to ten children out every day to take part in community activities. (The Hamlet Centre Trust, Norwich)
School holiday play schemes for children with complex health needs
Specialist groups providing one-to-one support for children who find it more difficult to use play facilities because they require nursing care. Twelve children attend each day on 24 days per year for a six-hour session. (The Hamlet Centre Trust, Norwich)
Weekly clubs for children and young people aged 8–13 and 13–18 on weekday evenings in term time. Staff ratios are high enough to ensure that those with high care needs can be fully included in activities. Children contribute to the planning of the programme. (The Hamlet Centre Trust, Norwich)
‘Transitions’ summer holiday club
A service for young people who are making the transition to adulthood. Supported by four members of staff, they choose how they want to spend the day: swimming, bowling, picnics in the park, trips to the cinema, pubs and restaurants, and so on. This allows them to take part in activities similar to those of their peers, but with appropriate support to ensure both their safety and the peace of mind of their parents/carers. (The Hamlet Centre Trust, Norwich)
A nursing service in the child’s home provided by a qualified trained nurse or trained carer. This can include day care, evenings and weekends or a night-sitting service (Mid and South East Essex PCTs, West Hertfordshire PCT; Norfolk PCT/County Council).
Good practice example
South East Essex PCT has two full-time nursery nurses (National Nursery Examination Board trained) providing a caring and support service. They have additional training to provide specialist paediatric care and can take sole charge of the children. There is also medical back-up, although this is rarely needed. Parents can choose either to go out by themselves or to have help with the child while at a function such as a party or swimming gala. This can help the child and parents to take part in activities with siblings. Due to the small size of the team and high demand, the sessions are currently restricted to three hours. However, two sessions can be offered back-to-back, giving a maximum of six hours.
Home-based palliative care
Community teams offer outreach care providing home-based nursing services for children with life-limiting and terminal conditions. (Norfolk PCT; Mid Essex PCT; SHSSB, Northern Ireland)
Home-based support worker
Support workers go into the family home and undertake a wide range of tasks, from washing windows and helping with the shopping to taking a sibling out to get a break from home. Staff are not medically trained and do not provide nursing care. (Rainbow Trust, Leatherhead; Crossroads, Norfolk).
Offering practical help is a safe way for families to let in people to help and build up confidence with a support worker.Staff member, Rainbow Trust
These units provide holidays for children on their own or with their families. Typically they offer both indoor and outdoor activities as well as having staff to provide nursing care and support as needed. (Rainbow Trust, Leatherhead; Norfolk County Council)
Good practice example
The Rainbow Trust Children’s Charity based in Leatherhead provides breaks for families in two residential units. They have numerous facilities, including indoor pools. Staff are on hand to carry out all household tasks and offer support to the family. Homes also have 24-hour phone lines to staff support should families require it.