Monthly Archives: March 2017

0 Personalisation: The Illusion of Choice?

Dear Reader,

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.

0 Every Day Disability Hardship and the glass ceiling

Today I write on the topic of every day disability hardship.  Across my life I have noticed a kind of paradox of late.  It is a kind of impairment based glass ceiling.  On the one hand, life seems to be more accessible than ever before.  The opportunities are greater, technology helps to make things easier, employment more flexible.  The possibilities are there.

Scratch the surface though and you’ll see people hitting the glass ceiling every day.  Just in my life of late, I know three people who have been adversely impacted by the continuing cuts that are having a debilitating impact on the lives of disabled people. Thankfully we are emerging from winter, a time which can be harder for many people as the cold exacerbates their impairment(s).

In each of these cases, people had their cars or other means of transport taken away from them.  These are people who already buck the trend in holding down jobs.  In order to get to their jobs they need reliable, accessible transport.  The impact of their transport being removed is that they can’t get to work.  They can’t get to work so they can’t pay their taxes and make a valuable contribution to society in numerous other ways.  These are people with specialist skills and abilities whose capacity to use their lived experience of disability in conjunction with the technical expertise they have makes them priceless assets in their respective fields.

I really loathe this analogy, but it feels like there is a war going on for disabled people.  A war where they have to fight to do the everyday things on the one hand, and are being compelled to have to justify the help they need to live their lives on the other.  Even more depressing, it feels like a war that is being lost.  I’ve also been aspirational in referencing employment.  There are those people for whom getting up and out of bed is an achievement.  As i’ve discussed before, Social Care is on its knees so even just doing the everyday basics is a feat in itself.

It saddens me to be this negative.  In my various guises I often hear requests for more time and money to make things happen.  In this instance that would undoubtedly help but I think the issue is an even more fundamental one: Try actually understanding the needs of disabled people, to understand the issues they are facing.  This understanding is something we are light years away from and which is badly needed.  With such an understanding the true impact of this war and the everyday casualties it is taking can at last be understood.

Every day I see people who are just trying to do their best, who want to contribute in all manner of senses, but who are unable to do so.  These people are tenacious, talented people whose resolve is being grounded away by the barrage of issues that face them.  If this is the case for those who have had the stomach for a fight, i’ll leave you to imagine what has happened to those who do not or are no longer able to.

As for me, i’m fired up.  The ceiling is glass which means it will be smashed.  I’ll keep working and writing and winning so I can show that there is a way ahead.  Every day disability hardship won’t count me as a casualty.