I’m aware my blogs may seem a little melancholic of late. Rest assured, I have the ‘Get Home Happy!’ playlist on Spotify in full flow as I write this. I’ll refrain from swearing at this early juncture, but recent reflections and experiences have shown me how profoundly difficult life can be for disabled people. I raised my eyebrows when I received my council tax breakdown today, and my statement showed that my local council had allocated a grand total of £41.04 to address the frankly calamitous state of social care. That won’t even touch the sides.
So we have the suitably austere backdrop painted out nicely. If this was a holiday, we’d certainly not be getting 5 stars on trip advisor, and it would almost certainly be raining with stormy skies ahead. Your protective umbrella would have already blown out too.
I’ll give you some context to this blog. The theory behind personalisation is fantastic. It is designed to cut out the middle man and give disabled people the ability to decide how money is spent for meeting their own needs. The Department of health defines personalisation in the following terms “every person who receives support, whether provided by statutory services or funded by themselves, will have choice and control over the shape of that support in all care settings.”
Choice and control. Empowered to exercise ones own judgement. All seems good in theory. What about in practice?
Not so fast..the lived experience of this disabled person is the ‘choice and control’ exists in name only. Worse, you are given the responsibility for administering this as social services just don’t have the resources to do this now..So how is personalisation operating in practice?
My latest joyful experience has involved helping trying to get Fran’s wheelchair replaced. Where was the choice? There wasnt one, not a real one. You use the designated provider, or you fund it yourself. Brilliant. A wheelchair is one of the most important things that exists in the life of a person who needs one. In cases of people who use them full time, they are as good as your legs and the only means you have to get around. You can spend as much as 12-16 hours a day in one, 7 days a week. Having one that meets your needs is vital.
The private sector provider of the service locally (which has a notoriously awful reputation, despite ‘improving’) has taken about 6 months to even assess Fran and we’re still waiting. The range of wheelchairs Fran is allowed to have is very limited (again, no genuine choice here) and its either that or nothing. It’s another example of a great idea being hacked apart and bought into disrepute by people who have no empathy, understanding or frankly clue about how to meet the needs of disabled people.
Add to this the restrictions on how the pot of money that personalisation can be used for being increasingly and ever more tightened and the picture of choice being an illusion becomes all the more graphic. What a sad way to treat a brilliant idea. Disabled people are again given the short straw as a result. Not even the ‘get home happy’ playlist can do anything to address that.