Being disabled can be a full-time job. Recently, I began using the
direct payments scheme. So rather than other people organising my
care package, I am supposed to have greater freedom of choice about
who, how and when I receive the care I need. It is being sold as
the means to achieving greater independence.
What I am finding out is that direct payments also means more
responsibilities, risks and problems to solve. Which means more
When you take on the direct payments scheme, you will probably
employ people yourself, rather than pay an agency.
When you become an employer, you have to be responsible for paying
people regularly (the people who work for you rely on you for the
money to pay their bills and so on).
You will also have to pay the Inland Revenue the appropriate tax
and national insurance contributions. And you will have to ensure
that you are insured against damage and injuries to yourself and
your carers. To do all of this, you have to keep accurate records.
Although there is often help available, you have responsibility for
recruiting and selecting your carers. This can take a long time.
There is always the risk that the carers you choose will be go
sick, leave or just be unsuitable. You quickly realise that you
need contingency plans for when things go wrong – and, believe me,
they will break down at some point! And I haven’t even begun to
address the minefields of employment law, health and safety
legislation or staff trainingÉ
If I don’t agree about the hours of care I need, or I think the
rates I’m expected to pay my carers is not competitive, I have to
negotiate with my local social services department and the
independent living fund about how much they are prepared to pay for
You might say that this is all part of being more independent. It
seems to me that it has turned being disabled into full-time job.
Unpaid, of course.