Debate on take up of direct payments

We asked:- With take-up so low in so many areas, how can
the concept of direct payments be reformed?

These are some of the comments we received:-

“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 article about direct payments in central Manchester
appears in Community Care today.

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