Page 17 - Community Living Magazine 35-2

inclusion
lif
e
Having got the package of care, I waved
social services goodbye, and Brian went
to a college doing basic mechanics and
car maintenance.
Then along came direct payments. I
looked at how they were intended to
work and talked to a woman in the direct
payments office in Westminster.
I decided that this would give Brian
more choice and control over his care,
and that he could use it to his advantage.
So I applied – and hit the brick wall of
social services as, in the beginning,
direct payments were a concession, not
an entitlement.
However, this soon changed and I was Playing the guitar with Brian & The White
banging on the door of social services Lightning; Brian working with Les Scaife, using
again. This time, they had to give way as it tools that improved his hand-eye coordination
seemed I knew more about the payments
that they did. take all their benefits, giving them back
Having got the direct payments, I £25 a week for pocket money.
again waved the social worker goodbye Because there is a carer in the house,
and we set out to decide what Brian he would also lose his direct payments
wanted to do with this money, which and his carers, and it would also deny him opportunity to get there. Unfortunately,
he could use to employ personal his social life that he so enjoys. people with disabilities do not get
assistants (PAs). After doing some sums, it looks to me those opportunities.
He opted to further his love of music so as if local authorities make a fortune out It is surprising what can be achieved
he employed two PAs, both of whom of vulnerable people In supported living. when people are given such
played guitar. One of them teaches guitar So I have opted to place Brian with a opportunities. We all have a gift but some
so Brian was in his element. Brian’s PAs family that I know and trust. His benefits get the chance to develop their gift while
have now formed a band called Brian & will pay for his keep and still give him others do not.
The White Lightning to raise money for a the same amount in his pocket money Brian has got to where he is mainly
local food bank and a football team for as he had before. This way, they cannot without the “help” of social services. I
disabled people. take his direct payments away from shudder to think where he would have
In 2002, I formed a charity, West him as they are not providing any been now if we had not taken the stand
Lancashire Peer Support, to help others additional care. we did against the segregation of people
manage direct payments, as you become There is a plan B if something happens with disabilities.
an employer when you get them. to the mother of the family where Brian Day centres and special schools are a
The responsibility of tax, national will be. The daughter is a nurse and will form of segregation as far as I am
insurance, contracts of employment, have Brian with her family should it concerned. Others will disagree but, when
keeping financial records for audit and so be necessary. I look at Brian, I am pleased at what he
on can be too much for family carers. has achieved when given opportunities.
We now manage around 120 packages Opportunities at the outset To sum it all up, we do need support
of care for direct payments and personal When I look back over the years since for vulnerable people but that support
health budgets, and we are also corporate 1977, I see that people with disabilities must be flexible and restrictions on
appointees with the Department of Work are not given opportunities in the same what direct payments can be used
and Pensions. way the rest of society are; we are all for must not hinder the opportunities
I am fortunate to be working with where we are because we had the for people to develop their hopes and
people who are so committed to choice dreams in the same way the rest of
and control. In 2007, we assisted with society does.
setting up direct payments in Australia. We have to remember that we also
We toured Australia every year until 2016, have responsibilities as parents to help
speaking to state officials and families on our sons and daughters to have a better
the benefits to both sides of direct experience of life than the establishment
payments and peer support. has planned for them.
At 90, I have now had to think of what Brian is now living with his new
will happen to Brian when I am no longer family. I visit him twice a week and
here. My daughter lives in Surrey and was there last night to celebrate his
Brian wants to stay in Lancashire with 49th birthday.
his mates. I am happy that I can rest in peace
So I looked at supported living and did when the time comes, knowing that
not like what I saw. It seems that social Brian is happy and safe with his new
services place people like Brian in a house An engine restored by Brian at Duchy College, family, and all achieved without the help
with other people and a carer. They then which is based at a working farm of social services. n

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