Scope AGM October 2008
A speech given by Anne Pridmore
Good afternoon, my name is Anne Pridmore, and for the last year I have been
a Trustee of Scope and Chair of the Engagement and Influence Committee.
As Brian has already outlined the reform of the social care system, or social
support system as Scope prefers to call it, is a really important issue for
disabled people. Without access to high quality, personalised and affordable
social care support many disabled people, myself included, are unable to
decide for ourselves where and how we live our lives.
Today is a great opportunity to involve Scope’s members in developing a new
Social Support system that meets disabled people’s needs and supports our
independence. All the opinions and suggestions made today will be
incorporated into Scope’s official response to the Government’s consultation.
Scope staff will also make sure that your views are communicated directly to
the Ministers and civil servants who are responsible for transforming the way
the system operates.
This is about our lives so we need to make sure our voices are heard.
As well as having personal experience of using social support services for the
last 3 years I am also involved in trying to improve social support for disabled
people more generally. For the last three years I have been a board member
of Skills for Care, representing disabled employers who employ their own
PAs, enablers, carers etc. Skills for Care seeks to modernise and regulate
social care in England by ensuring qualifications and standards for support
workers are continually updated and adapted to meet the changing needs of
the disabled people who use these services. Even though the board is made
up of employers it took me two years to get a seat created on the board for a
representative of disabled employers. Before this I had to be the service user
representative.
To help set the scene for our discussion today I wanted to share with you
some of my own personal experiences of using social care services. In
particular I want to share my thoughts on the three questions that Brian Walsh
has asked us to think about today.
So to address the first of Brian’s questions, what would I say are the
main problems with social care at the moment?
I have been a user of social support services for 24 years since my partner
left me. It’s fair to say that in my life so far I have had my fair share of
interaction with social care services! Not all of it positive.
I had always considered myself to be independent, but when my marriage
broke down I needed support as before this my partner and I supported each
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other. I was told by my Local Authority that ‘nobody knew what to do with me’,
and the services I received were limited to getting me up in the morning and
putting me to bed at night.
From 1986 until 1991 I had absolutely no control over when I got up in the
morning, when I went to bed, what time I ate, when I had a shower etc etc.
In fact, because I had such little support I was unable to keep myself clean –
my home carer would come in at 9am and I might not see anyone again until
anytime between 6pm and midnight – as a consequence of this I was forced
into having a hysterectomy.
In any one week there could be as many as 12 different people in my home.
Because the rota of care and support staff was prepared a month in advance I
couldn’t do anything spontaneously which meant I was unable to maintain or
form any important relationships. In fact I got so angry about this I once put a
notice on the back door saying “No care needed today – man in house!”
At this point in my life I had practically no choice and control. I often had to
entertain visitors in my nightwear because staff would come to undress me at
7.00pm in the evening. If a Monday involved a Bank Holiday then I had no
shower – sometimes for as long as three weeks. If I had still been in this
situation I am sure that I would not be able to be here today!
My determination to regain my independence and to be able to control where
and how my support was provided led to a long battle with social services. It
took seven years of fighting but in the end I managed to get some funding to
gain some control over my life.
I was the pilot for what was then called the independent living project. This
was a scheme which social care monies were paid directly to a support
organisation run by disabled people who managed my social care funding on
my behalf. It was some years later that I managed to get 24 / 7 support and
was able to hire and fire my own staff.
There are many aspects of the current system that fail disabled people. But
for me, the worst thing about the current social care system is that it
disempowers disabled people and makes us unnecessarily dependent. In
most cases services are still provided at the convenience of the provider not
the disabled person. Disabled people are prevented from moving to another
local authority, we are forced to live in residential care and regularly denied
the levels of support we need to lead dignified fulfilling lives on a par with nondisabled people. This lack of control impacts on every aspect of our lives,
from friendships and relationships, to work, education and leisure.
It goes without saying that it’s hard to hold down a job if the person supporting
you to get out of bed doesn’t turn up until 10am and you can’t have much of a
social life if you’re in your pyjamas by 7pm. At the time my partner left me I
had qualified as a psychologist but was never able to put this into practice as
my support needs were not met.
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The current social care system is complex (like so many things that impact on
disabled people’s lives) but this complexity is no excuse for denying disabled
people the right to control their own lives. Many changes are needed to
transform a system that currently disempowers disabled people by denying us
the right to make our own decisions about how and where we live. But,
without these changes disabled people will continue to be second-class
citizens, denied our fundamental human rights to dignity, freedom and justice.
This is the reason that this discussion is so important.
So, what’s good about social care services?
You might expect the answer to this question to be rather brief, but in the last
10 years attitudes towards delivering social support have changed
dramatically.
In 1991 everything changed for me. I was invited by my Local Authority to join
their Joint Strategy and Planning Committee and I went to the King’s Fund in
London to a conference on Independent Living. Here I realised that receiving
services instead of cash meant I had no quality of life or any control. Two
years, and many grey hairs later, I challenged the system and got 35 disabled
people the right to hire and fire their own staff.
Since then I have used Direct Payments to employ my own support. I can
choose what time I get up in the morning and go to bed at night. I can
maintain relationships and form new ones. I can choose what to eat and
when to eat it. This is the choice and control that I should have always had,
that surely is a fundamental right of everyone. Using Direct Payments, I
currently employ and manage six Personal Assistants and actively campaign
to help other disabled people do the same.
Direct Payments and Personal Budgets allow disabled people to receive cash
instead of direct services. Cash payments mean we can employ our own staff,
on our own terms.
However being an employer can be a daunting task especially for disabled
people who have never been employed themselves. Having support from a
disabled people’s organisation or a Centre for Independent Living where
people have shared experiences can be a great confidence builder. Peer
support is essential for disabled people who employ their own staff. Many
Local Authorities have taken the support “in house” which concerns me as this
can never really be objective.
It’s not an understatement to say that Direct Payments revolutionised my life.
They gave me back my independence and allowed me to live my life on my
own terms with dignity. Though it is by no means smooth sailing because as
employers we have to follow the same employment law as ICI! However I can
honestly say that I would still much rather employ my own support than use
direct services.
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I am all too aware that not everyone is offered Direct Payments and that, for
some people there is precious little support to use them effectively. For some
people the level of funding is too low to buy the services they want, and for
many others quality services are just not available. I know of many people on
Direct Payments who have no choice but to buy poor quality local authority
services because nothing else is available.
So I welcome the increasing focus on personalisation within the social support
system but there is no doubt that we have a long way to go. Political support
for personalisation is there but willingness to pay for it is not. The view that
disabled people should have to pay for the support they need is probably the
biggest threat to our campaign to achieve equality.
So, turning now to the 64 thousand dollar question, what would I change
about the current system of social support?
Social support is about enabling disabled people to do the day-to-day-things
that non-disabled people take for granted. The social support system should
put disabled people on a level playing field with non-disabled people, meeting
our day-to-day support needs so we can participate as equals in community,
family and social life.
In order to achieve this I would like to see four key changes:
1. Create a truly personalised system and give everyone the right to a
Direct Payment or Individual Budget so they can control who supports
them and how. Make sure disabled people have the support and
information they need to make best use of their budget and that their
budget contains enough money to meet their needs. Also when a
person feels unable to “be the boss” there should be enough monies to
buy in this support from a person they choose.
2. Abolish the postcode lottery so the level of support disabled people are
entitled to doesn’t vary depending on where they live. I know so many
people who have moved counties and had to fight to get the same level
of support or wait for months while their support package is organised.
Many of the people who use Scope’s services are prevented from
moving because the local authority refuses to accept responsibility for
funding their support. This is not a fair system – eligibility for support
should be based on someone’s needs, not on their postcode.
3. Abolish charging for social care services. Disabled people should not
have to pay for services that they rely on to lead independent lives.
Non-disabled people don’t have to pay to have a shower, go to the
toilet or to get out of bed. Charging disabled people for vital services is
like taxing us for being disabled people. It is unjust and in my opinion
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breaches disabled people’s human rights. Charging also contributes to
many people living in poverty.
4. Replace the current system of multiple assessments with one joined-up
assessment that focuses on the support someone needs to achieve the
specific outcomes they want. Disabled people and their families should
also have access to comprehensive advice and information about what
options are available to them. Local Disabled People’s Organisations
are well placed to provide this information and support people with
assessments but they need funding to do so.
Thank you for listening. I hope I have provided some food for thought as we
move into the group discussion. Before I hand back to Brian so he can do a
quick recap on what we’re going to do next I wanted to end by reminding
ourselves of the slogan adopted by the Disabled Peoples’ Movement many
years ago. The slogan is:
‘Nothing about us without us”
I think it is particularly apt as we enter into a discussion about the future of
social care that we remember that the proposals that Government eventually
makes will affect our lives and those of our families. These proposals must be
designed with disabled people, not on our behalf, so it is vital that we make
sure our views are heard loud and clear.
email: info@daa.org.uk
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