Discussion Forum

Discussion Forum

In the run up to our conference on the adult social care green
paper on 27th June, www.communitycare.co.uk
will be running a discussion forum on the many themes within the
green paper for you to participate in.

If you want to join in the discussion, all you need to do is
email comcare.discussion@rbi.co.uk
and your comments will appear here.

Adult Social Care Green Paper series

“As a disabled husband and father living at home with my family,
there are times when my paid carers (direct payment funded and
employed by me) are not around ie in the evenings, during the night
and my wife carries out my care. If she lived next door, I could
pay her, but because we live together, I can’t.

I’m delighted to employ PA’s/enablers/carers, but not
having, or wanting 24-hour care, I would like to pay my wife for
the hours she does.  Will the new thinking in the green paper allow
this to happen?  There are many disabled people who rely on close
relatives for care during “unsocial” hours who can’t receive
payment for the care they give.

Whilst my wife enjoys a part-time job away from me, the extra
money from caring for me might mean a better lifestyle for both of
us.

I can’t attend the conference but would like this issue to be
raised at the appropriate junction to seek the views of others.

Thank you in anticipation.”

Dick Harris
Coventry

“It would seem that one of the areas of difficulty within the
direct payments scheme as proposed/operating is the lack of
necessary protection and safeguards for those individuals who are
or may be in need of such protection.

This is not to say that all individual service users will require
such measures, but if the uptake and successful use of direct
payments is to be extended then some individuals will undoubtedly
require these. For example, the fact that at present service users
are not themselves able to access Criminal Records Bureau checks
concerning potential employees/carers is one area of major
concern.

Levels of vulnerability for some people are such that safeguards
like CRB checks are one way of trying to ensure that people are
afforded reasonable degrees of safety and should not experience any
increased risk of harm or exploitation.”
 
Bridget Penhale
Senior Lecturer in Gerontology
CARER Department
University of Sheffield

“As a family carer of three young people with learning
disabilities, I see little to give me any reassurance in the green
paper that direct payments and individualised budgets will
genuinely secure my children’s futures.

Does the government really believe that there is the potential
in the workforce to recruit sufficient personal assistants, when
the role is devalued, underpaid, insecure, and has few career
prospects? If so, then its simply naive.

And am I supposed to be enthusiastic about the fact that there
is no requirement proposed to police check this workforce, despite
its significant expansion?

Although I really want my children to have as much power and
control in their lives as possible, I hope that in this
consultation period some commonsense will prevail in that the
expansion of both of the above programmes will be accompanied by a
requirement that there will be a mandatory establishment of direct
payment support agencies and brokers in all social services
department areas for all those families who are too exhausted by
their caring responsibilities to take on yet more work.”

Denise Mitchell

It is interesting to read your comment: “With take up low
in so many areas, how can the concept of direct payments be
reformed? “.
 
Are you suggesting that there is something wrong with the concept
or are you acknowledging there are problems with the uptake?
 
Having had some experience of helping people take up direct
payments, I firmly believe that it is the latter issue that needs
addressing.  I also believe that “reforms” of the concept whatever
they look like will only make take up more complex and less
satisfactory for the recipient.
 
The existing issues for the further development of direct payments
in my experience are:
 
1. The Dosh.  Local authorities can only fund people by reprovision
of their revenue funding.  This in itself is a long-term process
with the run down of local authority provision.
 
2. The Communication.  Several people including  the recipient,
their social worker, the recipient’s carer (in some circumstances),
a facilitating organisation such at the Rowan, possibly the local
authority finance officer, possibly the job centre staff and the
personal assistant are all part of a communication process. 
However there is no overall co-ordination of this process unless
the recipient themselves or advocate takes up the driving
seat.
 
3. The legality.  The recipient has to articulate that they
actually want direct payments.  Otherwise their carers may need to
set up non-direct payments which is possibly even more
complicated.
 
4. The fear.  Families are rightly fearful of the whole thing –
becoming an employer, interviewing staff appointing the right
person.
 
Happily in my experience none of these issues when broken down are
complicated.  However it requires the vision and the determination
and some creativity to pull it all together.
 
Are we still to lever this vision, determination and creativity in
so many local authorities?”
 
Alex Houghton

My main concern about direct payments in mental health at this
time with what I have experienced in central Manchester is that
nobody must die while they are using them.
 
I have felt close to death everyday of the last four months. Direct
payments in mental health in central Manchester are not at all safe
at this time as I believe the direct payment staff have no mental
health training at all.

I have experienced terror during this time, and I do not want
anyone else to go through what I have been through.

There needs to be a safety in direct payments in mental health,
things need to be well set up to meet the needs of an acutely
mentally ill person. I experienced a complete lack of safety, and
even though I was working as a director of MIND I still felt
vulnerable because of the seriousness of my own health
condition.
 
My support worker who was another director of MIND worked many
hours work to try and bring direct payment in central Manchester to
safety, and to try and save my life, but that was work the direct
payment staff should have done themselves before I gained my direct
payment status. In actual fact the direct payment staff could not
have done that work anyway because they did not have the expertise
that they would have needed to do it.
 
It is no good to just give out the direct payment money, that may
work in physical health, but it certainly will not work in mental
health.”
 
Alison Margaret Leslie

“The battle to achieve the right to an independent lifestyle
of choice was fought long and hard by disability rights campaigners
and disabled service users themselves. To suggest a reformation of
the concept of power, control and self actualisation could be
viewed as discriminatory and critical of the scheme itself.  

However, the continued lack of take-up in many areas,
particularly Scotland, would suggest some sort of a radical
overhaul, especially in light of the government’s green
paper.
 
Many studies continue to point the finger at social care
practitioners and cite their lack of knowledge, enthusiasm and
confidence in the scheme as playing a major part in low take-up.
Whilst this may well be the case, what is being done to support us
in our decision making where direct payments are an option for our
clients?

It would appear that there continues to be a distinct lack of
clarity and consistency, especially in relation to moving and
handling issues for PA’s and users. Where there is
vulnerability to consider this can be a major stumbling block.
Another key issue is around “assistance to manage” and often
workers need to separate these out allowing the client a final say
and respecting carer’s rights. Without a robust support scheme in
place, the quarterly monitoring and yearly reconciliation process
can be time consuming and turn workers into accountants.

These and many other issues have been around and are still as
prevalent since the introduction of the Direct Payments Act 1996.
Direct payments are a truly viable option to traditionally arranged
social care provision yet need not so much reformation but higher
profile and a holistic support service to meet both user and
practitioner needs.”
 
Pat Blades
Care Manager

“I have been involved with direct payments not just as
someone who is involved in the management committee for the support
service which supports users of direct payments but also as a
recipient of direct payments.
 
Prior to getting a direct payment I was dependent on social work
departments sending someone at their convenience, doing work
assigned by the social work department and not taking into
consideration my own needs, the needs of someone who is on the
board and work groups of many organisations both locally and
nationally.

For me direct payments have been a life changing experience. I
can now employ my own staff, negotiate my own hours, the work and
support that I as an individual need and I am always aspiring to
ensure that my staff receive any training they need and more and
have the best terms and conditions available.
 
If the process is slow I would suggest that it is because of the
pressures on social work departments with all the other workloads
they have and that when there is a good support agency such as we
have in Borders a lot of the work can be done in partnership and we
have been constantly in the highest bracket of people using the
service.
 
I would suggest that if social work departments are having problems
coping with the workload that the powers that be give the monies to
and independent organisation to ensure that recipients receive
their assessment and their direct payments without being constantly
worried if it is going to return to the bad old days when we had to
wait to see who we were going to get, when they could come and what
they could do!
 
We have our service the way we like it and would like a little more
support from the people who are there to ensure we have the care we
need to live our lives independently.”
 
 
Margaret Simpson

“For us locally the big block is scarcity of community care
funding. Unless there is a directive to ring-fence a budget
specifically for direct payments, I don’t think it can get off the
ground.  The initiative needs pump priming before re-direction of
current resources can happen.  Currently if for example a person
with mental health problems wants to change day centre support for
something costing the equivalent it is not possible to ‘strip out’
their unit cost from the day service to give it as a direct
payment.  It is not lack of enthusiasm or willingness on the part
of service users or staff that is holding this back – it is purely
lack of adequate resources.”

Diets Verschuren

“With take-up so low in so many areas, how can the concept of
direct payments be reformed? The question itself is puzzling as
direct payments are not a concept but a tool to facilitate
Independent Living. In particular the right of people to control
the assistance they require to live their lives. Direct payments as
with any tool might be badly or inappropriately used, the
advertising might be poor and the instructions worse than a
computer manual. However this is not a problem with the concept but
rather with the implementation. Where these issues have been
resolved you will find a higher take up of direct payments.
 
 All too often we come across disabled people receiving community
care services who have never been informed about direct payments.
At the same time we also are aware there are areas of the country
where it is difficult to access the support required to manage such
a package.  
 
Research over the last few years has tended to show that a low take
up in direct payments is related to a lack of promotion and support
for direct payments. Many community care workers are reluctant to
promote direct payments perhaps:

– because they do not feel confident in their understanding of
direct payments; Is there sufficient training within social work
courses about direct payments and Independent Living?

– they have concerns about the risks involved and are worried
about their responsibility if things go wrong;

– there may be structural issues for local authorities for
example the transfer of funds from block funded institutions such
as day centres to individual packages.

However social workers have a legal duty to inform people
assessed as requiring community care of their right to direct
payments.  LCIL’s experience suggests that this often is not
happening and when people do seek direct payments barriers are
being put in the way.
 
Ruth Stark proposes that the duty to promote direct payments
breaches a social work code of ethics (Community Care May
12th).

“The code of ethics social workers follow prevents them
promoting direct payments. We must keep vulnerable people safe”

She suggests the solution to this would be a register of
personal assistants. This argument seems to me to be geared towards
protecting the social work profession rather than the individual.
Indeed Ms Stark refers to this:
 
“When the first case of abuse arrives it will be the social work
sector that gets blamed”.
 
Accepting this way of thinking will diminish the responsibility of
individual disabled people and consequently restrict their choice
and control. Abuse, itself is often associated with situations
where an individual is disempowered. Should we be referring to
“vulnerable situations” rather than “vulnerable individuals”? There
are however ways of reducing risk which ensure the disabled person
has control.

To do this PA employers should have access to training and
support in the recruitment and management of Personal Assistants
and the contracting with agencies.  This support should be both
proactive in helping someone to design their package and prepared
to be reactive in times of difficulty.  The Independent Living
Movement identified a need for peer support at the same time the
need for personal assistance. Peer Support can provide an
opportunity for PA employers to share experiences, knowledge and
skills. This has led to the development of user led support
organisations such as the Centres for Integrated (Inclusive or
Independent) Living which aim to use peer support to provide the
services, knowledge and skills individuals need.

In relation to criminal records checks it is notable that the
Scottish Personal Assistants Employers Network (SPAEN), a Scotland
wide peer support organisation has set up mechanisms to facilitate
criminal record checks if PA employer’s wish them.
 
As direct payments are developed there needs to be equivalent
support for the development of these organisations so they can
provide the support which will reduce risk. These should not be
another level of bureaucracy but rather a coming together of the
people who use the services.
 
Social workers do have a responsibility to ensure an individuals
needs are being met. Ensuring that there is an opportunity for
regular contact between a named community care worker and the
direct payment recipient would hopefully ensure this happens. Sadly
however direct payment recipients are often put on to “open
passive” lists with access only to harassed duty workers.
 
Where there is concern about an individual’s ability to
manage.  Creative person centred social work rather than blanket
rules and procedures may be the way to do this. This work should be
in partnership. A number of PA employers we are working with refer
to having a their back up team consisting  of an Independent Living
and Payroll workers  from LCIL working in conjunction with the
individual’s social worker.
 
I would wish to endorse Nick Danagher’s (Executive Director,
National Centre for Independent Living) points at Community Care
Live when he said: “Social workers have generally been allies
in our struggle, and I hope those of you who are will continue to
work with us.”
 
Certainly members of the Independent Living Movement and Direct
Payment recipients are keen to work jointly with social work and
others to ensure a better implementation of direct payments. Talk
to us!”

Gareth Timms
Independent Living Co-ordinator
Lothian Centre for Integrated Living
Edinburgh

“Mixed views.  Whilst I rejoice in social care being finally given
the recognition it has long deserved, I feel there has been a lack
of honesty in not highlighting the fact that the current situation
is unsustainable. 

It is laudable and absolutely right that service users should be
able to access their own care and manage it via a direct payments
model.  However, will this ultimately lead to a ‘capping’ of the
amount of care available?  And, will social workers be reduced to
being purely brokers?  I am not saying that brokering is not a
valuable task but will this not lead to a need for less social
workers and more brokers and navigators?  I thought navigators were
found on the seven seas!”
 
Rita Newman

“For the past 20 years I have been both a social care
professional and the dad of several children with learning
difficulties. Thus far, the coverage of responses to the green
paper has seemed to me to be dominated by over- enthusiastic
interpretations of what the government is really promoting
here!

Clearly, more service user choice and control is highly desirable,
but let’s all read between the lines. The hidden agenda of
the paper is that it is simultaneously expecting families to do
even more in the future than they do now.  Stephen Ladyman’s
own admission to the launch meeting of the National Family Carer
Network made this explicit. And is this reasonable or indeed,
fair?

Any frontline social care worker knows only too well that there are
numerous families in this country who don’t have the
resources to take on yet more responsibilities. They are too busy,
too ill-informed, too dispersed, too aged – a whole litany of
reasons.

Perhaps the use of individualised budgets holds out a more
realistic solution than the expansion of direct payments to the
problem of engaging families. The latter expects that family carers
will really want both the extra work and the accountabilities which
accompany this.

There must be a nationwide expansion of service brokerage and
managed direct payments systems if this vision is to become a
genuinely supportive alternative to present arrangements. Families
already do enough.”

Chris Mitchell

“We know the introduction of direct payments has been dismally
slow. This has been for a variety of reasons. Some authorities have
their own political agendas and don’t want to relinquish control of
‘their’ services. Others have got tied up in knots over
consent. Some just can’t get their heads around the issue of
transfer of control whilst many still have services for people with
learning difficulties inextricably tied up in long-term contracts
and / or services, disempowering anyone wanting choice.

The introduction of individualised budgets will hopefully go
some way towards sorting this problem out, but I will want to
examine the ‘get out’ clauses, before assuming this
will resolve matters and move the situation on for people with
learning difficulties, whereby a majority still don’t have choice
or control.”

Andrew Holman
Inspired Services

I am a renal social worker in an acute hospital and I think direct
payments are a very good idea for service users who receive
dialysis. However, the process is very slow and, as you are aware,
delayed discharge legislation makes our job more difficult. I would
value any comments as I want to research the possibility of making
setting up this system quicker. Any ideas?

Deb Shakespeare