Even though I have had cerebral palsy all my life and will definitely have it for the rest of my life, it is only in the last few years I have realised what that actually means in relation to my personal assistance.
Requiring a lifetime of personal assistance is like being mother earth: while my impairment will worsen slightly due to ageing, it will remain essentially the same, while the people and policies around my personal assistance will always be changing. So while I know I am likely to need personal assistance for the next 40 years, I do not know how it will be provided and by whom. This is why I call myself a lifer.
This “constant” works on many levels. The first is at the policy level. I will outlast many governments, each of which will push the social care agenda in a slightly different direction which may be better or worse for disabled people. So while my needs will remain the same, over time it will be assessed in new ways and in new terms as eager civil servants try to make their mark in social care.
The second level is at an assessment level, which is mainly in the hands of local councils and social workers. While I have tried to invest my time to getting a good reputation as a lifer, I have realised every few years there is almost a complete turnover of staff. This means I end up back at square one and new social workers treat me like a new service user who knows nothing, which is extremely annoying as I often know far more than they do.
The third and final level is an individual one and regards the employment of personal assistants, which in one way or another will remain my task until the day I die. Being a personal assistant is an important job but not one which is respected by society or provides any career development. It is therefore unlikely any personal assistant will work for me more than a few years, especially because of the intense nature of the relationship. So I will always look forward or maybe dread having to find my next personal assistant, which could be next week or in a few years.
If I was a lifer in prison I would at least have some stability about my future but as a personal assistant user, stability is, sadly, an unattainable luxury.
Social care policy often does not often take into account the needs of lifers and how cost efficient it would be to offer them more stability.