Jill Davies, Research Programme Manager at the Foundation for People with Learning Disabilities:
"During the past few weeks I have been talking to parents for one of our new projects at the Foundation called An Ordinary Life. The project is seeking to gain the experiences from families who are caring for a child or young person with complex health care needs. I have managed to make contact with four families so far and what strikes me is how amazing these families are – both in their energy and determination to make sure that all members of the family are able to make the most out of life. They all acknowledge that their lives are very different from most other families, but it is not stopping them from trying to make sure they are still able to do ordinary day-to-day things.
One young boy can power his wheelchair around the streets of London, despite using an oxygen ventilator twenty four hours per day. Another mother wants her son to attend a local school in order to foster a circle of friends for him. Others have tried out an individual budget (money from the government that is given to people so that they can make their own choices about what care and support they need for their child) and described how beneficial it has been for them. For one family, an individual budget has meant they are able to choose which hospital their daughter will have treatment at because the payment can cover the expensive travel fees to get to London from their home.
These families have to work so hard to do things that others take for granted and I really admire their tenacity which enables their children to lead an ordinary life. As one mum said, “it’s easy to stay inside and not venture out when you have a disabled child. Force yourself out as there’s a lot going on that you won’t find out about if you stay at home”. All families said that when they set out as parents of a disabled child they were not ‘aggressive people’, yet in order to get the basics for their chid, e.g. a suitable wheelchair or an adaptation to their home, they have all had to become fighters. Some people might think that if you support someone with additional needs there is plenty of help to make sure that you get what is needed. I’m afraid this is not necessarily a reality. These families do not ask for luxuries, they just need support to remain in their own home to care for their child.
If you have, or know of anyone who has, a child who uses medical technology (such as long-term ventilation or is peg-fed) and have positive stories to tell us, please get in touch with me:firstname.lastname@example.org. Your experiences can really add value to our An Ordinary Life project and ultimately help to improve the quality of life or care for children dependent on medical technology. "
07 October 2011