Aging with Spina Bifida
As is the case for people in general, it is also true that people with Spina Bifida are living longer. The big difference however is that this is the 1st generation where greater numbers of people with Spina Bifida are living into older age.
Of course this is fantastic, but with such a development comes real challenge. Challenge for us with the condition, for organisations working for & with us and of course for decision makers in developing policy both nationally & internationally.
Consideration needs to be given as to how best to maximize the full integration of not just people with Spina Bifida but indeed all people with disabilities. Better structures, services & supports need to be the aim. That in my view can only be done if people with the lived experience are central to all stages of the process.
From a personal point of view the most important thing is that all people with Spina Bifida or any other disability for that matter are able to contribute to all aspects of everyday living. Unfortunately, we live in a very money driven world, but in order to get a fully inclusive society where we are able to participate on a par with everyone else, if it takes educating decisions makers & business owners alike on the value of spending power of people with disabilities “the purple pound” then so be it.
Realistic services need to be in place and some policies currently in place need to change. An example of this is “personal assistance hours”. Currently the allocation of these hours is generally only given for personal care needs. Whilst this is a need for many people others like myself need personal assistant hours for many and various reasons in order to maintain independence, so the criteria for allocation of the service needs to be reassessed. This would be a great start in the decision makers showing that they have the will to meet head on the challenge of people with Spina Bifida & other disabilities living longer. I look forward to any part I can play in that process.