“How can I get out with a baby and toddler who can’t walk?” “How can my son go abroad with us if he can’t bear weight and we can’t take wheelchairs on board an aeroplane?”
“We’d like to go camping with our family, but how is it possible?” “We are fed up with strangers coming into our home to care for our son five nights of the week. We’d prefer to choose our own team.”
These are a few of the questions asked by families who have sons or daughters with complex health needs or who are dependent on medical technology. Finding solutions to problems like these enables families to enjoy ordinary activities the rest of us take for granted. Yet attention to such concerns is often absent from the ways these families are currently supported. The numbers of children and young people with complex health needs is growing steadily and we need to ensure support is genuinely person and family-centred.
This article aims to inform and raise awareness about the aspirations of this group of children and their families and is based on a project funded by the Department of Health and carried out by the Foundation for People with Learning Disabilities. Nearly 40 children and families from five different areas across England took part in the project. We heard from them about the barriers to achieving an ordinary family life and what they were trying to do to overcome some of these obstacles and worked with some families to help them try new approaches.
What are the current issues facing this group of children and young people?
Increase in numbers
Children who are technology dependent or have complex health needs are growing in number and more are living into adulthood. Ludvigsen & Morrison (2003) reported a 77% increase in the number of children who are oxygen/ventilator dependent from 1997- 2000 and Townsley & Robinson (2000) reported a 60% increase in the number of children who were tube-fed over a two-year period.
The right to an ordinary childhood
As well as their health issues, these children face multiple barriers in order to exercise some basic childhood rights, including communication, independence, friendships and leisure opportunities. Research by Townsley & Robinson (2000) and Townsley et al (2004) showed that families had difficulties in finding and organising social activities for their child and ‘the system’ did not support their desire to do things as a whole family. These children are not only fighting to stay alive, but also for the opportunities to do ordinary things that others take for granted.
What makes an ordinary life?
When we asked families what would improve their quality of life, they often wanted support with practical issues. For example, a 15-year-old wanted to find out about the travel systems used in aeroplanes to support people with mobility problems. This issue was resolved when he visited an airline that demonstrated the travel systems they used.
Another pragmatic issue was raised by a mother who was unable to take her children – a baby and a toddler with mobility issues – out at the same time. Again the solution was simple: the mother has located a special double buggy, which means she and her two children can go out at the same time.
Although some of these issues may seem quite small scale, they can cumulatively make the difference to the quality of life that parents and families experience. It is sometimes the case that the little things can make a big difference.
Other issues that families face in relation to living ‘an ordinary life’ include understanding how the various ‘systems’ – such as social care – work, having access to timely information and having someone to turn to who can support them or help them navigate their way to the people who can support them. Below are the main issues highlighted by the project work as making a difference to the children, young people and their families.
Keeping things joined up
Children with complex health needs are usually in contact with a range of professionals, yet it is very rare to find a family who say they have someone who can join all these up for them. Key workers can help to reduce this stress by helping parents to navigate through the system and plan and get the right support for their child. National policy has promoted approaches such as the use of key workers for more than 10 years and most councils claim to operate key working, yet today it appears that many families still lack such a joined-up approach and some organisations that supported it are no longer funded (Limbrick, 2013).
Having the right home
Most children with complex health needs and their families will spend more time than their non-disabled peers at home. There are a number of issues to consider when ensuring that the home meets the child’s needs: it should, for instance, be warm and comfortable; have the appropriate aids and adaptations to keep the child at home and it needs space to accommodate the technology, equipment and supplies needed by the child. Families must also be informed about their rights to a range of benefits and the organisations that can help them make the most of their home.
Being part of the community
Getting out and about and being spontaneous in a choice of activities can be more difficult for this group, yet many parents spoke of their great desire for their children to have a connection with their community. Families need to be informed about the various ways that obstacles to full participation can be broken down. For example, Changing Places toilets – which have additional equipment including a height-adjustable changing bench, an overhead track or mobile hoist, a peninsular toilet and enough space for up to two carers – and the various models of wheelchairs and seating available, which can make going out less of a chore.
The personal assistant (PA) role also has a part to play in supporting engagement with the local community. While the focus of their support is usually to ensure the health and wellbeing of the child or young person, this should be extended: rather than merely helping children and young people to be present in the community, true engagement occurs when they are supported to take part in specific activities, by matching their skills, talents and interests with the range of activities going on in their local community.
Personalised support arrangements
The families we worked with in this project received support from a variety of sources. Some children were supported by the local children’s continuing care teams; other families were trying out personal budgets – including direct payments – and a few were using the new personal health budgets.
The stories we heard from those who have tried combined health and social care budgets are very positive.
They showed it was possible to:
■ Improve links between home and school, especially if PAs can work between the two
■ Fund specific equipment or therapies, e.g. wheelchairs, postural care support, sleep systems
■ Give families greater say over who supports the child/family
■ Ease pressures at transition to adulthood if the family
One of the key areas of concern around this approach is having a skilled workforce available to care for these children and clear lines of clinical governance for workers who will be performing very specialist tasks. Some families with personal budgets have found it hard to recruit skilled staff, or have trained staff over months to work with their child only to find the person leaves for another job.
Children with complex health needs require a wide range of support to ensure they have the same opportunities as their peers. Families described how having a suitable home, personal budgets – including personal health budgets – and person-centred approaches made a difference to their quality of life. They also discussed the need to understand how the various ‘systems’ work, having access to timely information and someone to turn to who can navigate or support them is key to living an ordinary life.
For most children and young people their families are their greatest allies: services need to recognise this and work positively with families, helping them to build their resources.
A variety of free resources developed through the project are available from http://www.learningdisabilities.org.uk/our-work/changing-service-delivery/anordinary-life/