Throughout my life I have always understood that the more independent you are, the less help you receive and the more you contribute to society, but the harder people make it for you. If I had given up years ago and opted for a bean-bag way of living, I would certainly not have the stress I have now. But this security would have brought boredom and that’s certainly not me.
The worst thing about independence as someone with high personal assistance needs is recruitment of PAs. However much you try to put in systems to recruit the best, it is simply a lucky dip as to who you end up with. While there are excellent people out there, there are also very bad people. When a PA does not work out and you want to sack them, there is always a fear of the unknown: will the next PA be better or worse?
Right now, I have the best PA I ever had. He is very intelligent and gives me the security to be my true self in a way most staff would not. The snag is that he is an immigrant and despite working hard legally for eight years while waiting for his claim to be a UK citizen, the Home Office has just decided he should no longer work. He must also sell his car and give up his home, to move into special Home Office accommodation to “speed-up his application”.
The whole government policy on asylum and immigration sends shivers up my spine with its resonances with 1930s Germany. It has been suggested we should “opt out” of all or part of the Human Rights Act 1998, despite the fact that it is a fundamental requirement of membership to the European Union. Our country is becoming a place where independence in a manner not acceptable to the state is seem as a act of terrorism.
Both my PA and myself seem to be being punished for our contributions to society. My PA is being treated worse than a prisoner of war, and I am left with the insecurity of not knowing if I will ever find a PA as good as this again. The quality of life I have enjoyed for some months will now be disrupted, maybe for years, because of the Home Office and a government that lives up to George Orwell’s 1984.
In my view the future of social care depends on supporting good personal assistance and this requires a positive immigration policy to fill the new jobs needed in social care. And the future of disabled people depends on their independence being rewarded and not punished.
Simon Stevens is chief executive, Enable Enterprises
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