Looking for an ordinary life

  During the past three years I have been fortunate enough to spend time with a group of children and young people with complex health care needs and their families.

These are a group of children who are increasing in number and are now moving into adulthood. These are children who may use medical technology to stay alive, which can take the form of oxygen ventilation to make sure they can breathe or are fed via gastrostomies because they are unable to take nutrition through the mouth.

What I have learned is that whilst these children’s health and medical needs are usually very well cared for, these children are facing barriers to exercising their basic human rights, which includes the right to communicate, to access leisure opportunities, and to make and maintain friendships. This is something we all take for granted yet for this group of children and young people, they face such barriers on a regular basis.

For example, I learned from some families that although their child went to a mainstream school, when it came to school trips the child had to go on separate transport or their parents had to take then because the school did not hire an accessible bus. We can all remember from our school days how much we learned from those bus trips and what fun it was – yet the child using a wheelchair is often unable to experience such fun.

Another teenager found out the boat the school hired for the school prom would only allow her to access one floor of it - not the floor where the disco was held so she would be unable to join in the fun with her peers. Thankfully, her parents and circle of support were not prepared for this to happen and now the school have booked a more accessible boat.

One young man had to get his family to fight for him to have an Eyegaze communication aid – as a result he can use the internet to keep in touch with friends, do research and his homework for his GCSEs. It also means he can control the tv channels and the scope for more independence is huge.

I can go on for ever describing the experiences of these children, young people and their families in exercising their basic rights. Having been allowed to enter this world I now see it from a very different perspective. When I enter a shop I now assess: are the aisles wide enough to fit a wheelchair; is there a Changing Places toilet in the town I’m visiting; and does that child have a circle of support that can ensure the child is fully participating in their local area?

These are some of the experiences and stories we heard from during the project looking at working in a more person centred way to support this group of children and young people. Nearly 40 people shared their obstacles hindering their quality of life and we supported them to try new approaches. From this direct work a booklet was written which incorporated lots of the questions asked of us by the children and their families. What made a difference was having joined up working – these families are in contact with a host of people and services and yet they all said that there was not one person coordinating it for them.

Families just want someone to listen and to help find a solution. Person centred planning is proven to be effective, especially for those young people moving towards adulthood. Through our work, young people, together with their circles, were given a voice and able to share their aspirations for the future. In partnership with the families we developed a health and person centred plan and a one-page profile which can be particularly useful during meetings to remind professionals that these are children and young people first, and their personality comes before their disability.

Finally, as well as supporting families we want to put the spotlight on the very specific needs of this group. What we have learned is that these individuals need a loud voice and platform to tell services how they need to be supported, with particular attention paid to breaking down the barriers against full integration in society. Show your support and find out more about the An Ordinary Life project.