Debate on direct payments

We asked:- Are local authorities doing enough to
encourage the take up of direct payments?

These are some of the comments we received:-

“The Commission for Social Care Inspection’s report
‘When I Get Older’ published on 1 April clearly indicates that
councils should step up their promotion of direct payments.

 Our report was based on MORI survey of public attitudes to
social care services that people might receive in older age. We
found that 73% of people thought ‘an individual needing
social care should be given money by the government/council to
choose and buy the services they want.

Yet only 9,600 people were receiving direct payments at the end
of March 2003 and take up remains low, despite councils now having
to offer them to all who are eligible and want them.”

Denise Platt
Chair of the Commission for Social Care Inspection

“I work in a social care team and we have many direct
payments users. We are told that legally we must offer them so we
do. 

But they are often misused so it may be that it is unequally
distributed. Many do not fulfil their responsibility in terms of
producing accounts to document how the money is spent which also
has an impact.

It is my opinion that younger disabled people have excellent
recourse to direct payments but I cannot comment on learning
disabilities or mental health.”

Anonymous

“My concern is that some local authorities are putting
such a narrow interpretation on the rules regarding consent to
receiving and managing a direct payment, that they are excluding
and discriminating against many people who have the label of severe
learning impairment, and are therefore not offering direct payment
as a viable option.

My 26-year-old daughter has been given such a label and finds
the concept of a direct payment too abstract to understand   She
also has no understanding of money nor how to manage it, yet it is
clearly evident that she loves and enjoys what it provides. She
understands nothing about employing people and the responsibility
which goes with it, but again, loves having her own team of
personal assistants which enables her to live in her own home and
be part of her community.

All these things have been made possible through an Independent
Living Trust, whose trustees take on the responsibility of being
accountable for the direct payment and other sources of direct
funding, as well as being responsible employers of a small team of
committed personal assistants.

My daughter’s lack of understanding of such abstract issues has
not prevented her moving out of the vagaries of impersonal group
living, out of the scourge of block funded contracts, and away from
the tiers of management in service-providing organisations that had
no real understanding of what group life was really like for her or
how distressed and unhappy she was. If they did, they did little or
nothing to change things without a big challenge from us as
family.

We live in Essex and our local authority is possibly further
ahead than many authorities in the country regarding direct
payments, which is good – though there is always room for
improvement!  We have an excellent Personal Assistance Scheme which
runs a payroll service and takes care of any the other
administrative things involved in employing a small team of PA’s.
This service is invaluable to us.

We as trustees take on a lot of the responsibility and worry of
finding compatible PA’s who suit my daughter’s personality and
needs. But compared to the worry we have felt over the years at her
been looked after and abused by staff we had no say about, and
some, who frankly I would not have chosen to have left my dog with,
all in the name of ‘care’, it is minor.

Finally and most importantly, it is worth remembering that my
daughter did not consent to any of the impersonal, segregated
services she has received for most of her life.  We as family did
not choose them either, as all we wanted when she was small was
intensive, practical, hands-on help coming into our home to assist
us. Sadly, that was not meant be, as our local authority services
did not extend to that and direct payments were a million miles
away. We were also new parents and ignorant of the system. So
instead had to take the so called ‘special’ services on offer or
break under the strain because we had no choice, no power and no
control in our inflexible, unresponsive service system.

It would be disastrous if direct payments and other sources of
direct funding fail, or are not provided, because a strict legal
interpretation is placed on the need for consent by the person
needing such payment, instead of realising that consent, can be
given in other ways.”

Jan Thurlow
Parent/Trustee
Independent Consultant

“I am a direct payments manager for Gateshead Council and
have been implementing Gateshead’s strategy to develop and
expand direct payments .The council and senior managers have
commitment to direct payments as part of promoting independence and
as part of modernisation agenda.

We want to offer person-centred services that are rights based,
not building-based services that are welfare-led. For the eligible
client groups, we are making the “duty to offer and make a direct
payment” a normal part of the assessment process.

We have effective and proactive partnership board that enables
all stakeholders to be part of the planning and prioritising of
direct payments .We have good support services in the voluntary
sector and making excellent use of Direct Payments Development Fund
by providing potential direct payment users with accessible
information .

We are open to learning more about how to offer support for
decision making for people with learning difficulties and working
hard at making direct payments an option for people with mental
health needs.

Gateshead feel that partnership and creative development work is
the way forward.”

Liz Bruce Direct Payments Manager
Disabilities
Gateshead Council

“As a care manager working with adult service users with
physical and sensory disabilities, mental health problems and older
people, I always try and promote the take up of direct payments
amongst my clients. However, the path is rarely smooth and can be
complicated by bureaucracy all the way.

I regard the Direct Payment support group as advocates for the
client and assume that the self assessment that they will have
enabled my client to produce will be a true picture of their
needs.  Why am I expected to challenge this assessment? Is it
because the cost may exceed what is reckoned to be acceptable from
a service centred budget and we should not be seen to be creating a
two tier system?

If I then return to my client and try to cut costs, I am then
focusing on what services we can’t deliver, rather then what we
can. The result is that I am then seen both by service user and
support group as the bad guy, despite the fact I have probably
tried to stand my ground and uphold the service user’s
assessment. I was even advised recently that the support group were
the “Rolls Royce” and local authority the “Mini”!    

Direct Payments are proven to increase independence, aid choice
and client satisfaction and be cost effective – a fact that the
majority of social workers accept. The reality is that we are often
so overwhelmed and weary from fighting so many other battles on a
daily basis it can be tempting to encourage the user down the path
of conventionally arranged service provision.  Not very empowering
I agree, but until resources grow in line with need I feel that
take up figures will remain low in relation to eligible users
.”

Anonymous

“I have found that Newham Council is a good example of a
local authority which is being as difficult as possible about
offering direct payments.

My friend has been asking for direct payments for years and had
experienced nothing but problems. I have asked for help and been
turned down or ignored despite the fact that I have multiple
disabilities.”

Kevin Fleisch

“We were encouraged by social services to accept direct
payments to pay for twice daily visits/care for my mother-in-law at
home. We naively accepted the task, employing an excellent local
woman who two months later needed a prolonged stay in hospital
followed by a two-week holiday a month later.

Trying to replace her was a nightmare in a rural area and we
ended up employing an agency who charged extortionate prices and
did not keep to agreed arrangements. Their excuses ranged from flat
tyres to hail-storms to traffic jams.

We wish we had sought independent advice before accepting the
responsibility of direct payments as it has been a nightmare.
Holiday and sickness cover are something we just had not
considered, although one very positive thing is that the Inland
Revenue business support team are extremely helpful regarding pay
slips, payment of tax.”

Diana Corrick

“While based at Essex social services a few years ago, I
attended many training workshops on direct payments. The training,
which was undertaken by Katy Murray, was very informative and easy
to understand.

I wonder if the reason many local authorities are not using
direct payments in any real way is due to care managers/service
managers’ lack of knowledge. I for one would welcome the idea
of being offered refresher courses and action learning sets in this
area.”

Susan Purkiss

“I work for an organisation which supports and informs people
about direct payments and we have four full-time staff dedicated to
doing this.

The local authority supports direct payments in so far as it
saves them money and we have found that it is the service users who
are most likely to be seen as ‘difficult’ when they are told about
direct payments.”

 Karen Christie

“Nine years ago, I worked as a day services officer in
Fareham, Hampshire with adults with learning disabilities. In this
capacity someone from the Self-Operated Care Scheme (SOCS) in
Hampshire came to explain their work to the staff. 

I was impressed with the direct payment scheme but was shocked
by the attitude of my managers and colleagues, almost all of whom
felt that it was not appropriate for “our people”, despite
empowerment and anti-discriminatory practice allegedly driving our
work.

I sincerely thought services had by now caught up and embraced
the idea of direct payments. However in my current job as a social
worker in a children with disabilities team, I have again been
gob-smacked by general attitudes.  Many of my colleagues seem
threatened by the idea of ‘handing over control’ directly to
families and seem to harbour a great deal of mistrust.  I have even
heard management state that “it may work for another county but it
wouldn’t work here with ‘our families’ “! 

It will be interesting to see whether such attitudes will change
over time, particularly as direct payments are now encouraged by
government, and the numbers of families requesting this service in
my locality continues to rise.”

Tina Chard

“I am currently working for Newcastle social services as a
social work student in my second year and from my experience, the
authority is doing everything possible for service users to take on
direct payments.”

Anonymous

“We would like to bring attention to the issue concerning
the wide discrepancies in provision of direct payments for disabled
people with similar needs. We have witnessed the devastating effect
this had on a close friend.

Our friend, June Maelzer, who died in January was assessed in
Manchester as needing 24-hours-a-day assistance and received a
direct payments of £60,000 per annum.  Prior to the existence
of direct payments, June had been funded through a grant she
negotiated with Manchester Council to employ her own workers.  Her
care plan evolved over the years with Manchester social services,
enabling her to find the best way of living independently.

When June decided to relocate to Cornwall a few years ago, she
approached the local council for a similar package, but was
formally informed that they would pay no more than £200 per
week.  For about two years before moving, June argued her case with
Cornwall social services.  At the same time, she was lobbying
unstintingly at government level making a stand not just for her
own right to choose where she lived without sacrificing her
standard of living but also to change the situation for other
severely disabled people in her situation.

Eventually Cornwall social services undertook an assessment in
Manchester of June’s needs.  According to June, the first
consultation draft (produced a few months later in March 2003)
“wants to surround me with hoists, environmental machines and
continence devices, assessing my human contact needs as three hours
a day.  This will save them money but shows no regard for my needs
as a human being and a part of society.  It is institutionalisation
in my own home.” 

Given that June was physically able to move only her head and
one finger the options proposed were entirely unrealistic.
Manchester social services offered to continue direct payments for
six weeks after June moved, but this was rejected by Cornwall
council who eventually agreed to a transitional arrangement to pay
for personal assistants for up to eight weeks whilst a new care
package was being arranged.

Tremendous stress resulted from all the uncertainty over these
protracted negotiations and took its toll on June’s mental and
physical health.  After moving, June had numerous meetings with
social services staff for assessment, manual handling and care
planning purposes.  Just as the eight week period was due to
expire, with no amended assessment report or proposed care plan in
view, June was admitted to hospital.  She had to continue her
battle from her hospital bed. 

Eventually on account of June’s terminal illness being
diagnosed, after much pressure, concessions were made by social
services when June came home and she continued to be able to employ
full time personal assistants on the same basis as in Manchester. 
June never saw this as a satisfactory solution: social services
were conceding on the understanding that the Primary Care Trust
would be responsible ultimately for all her care needs in the
community.  The campaign June had been waging, and she felt must
continue, was for everyone to have the same rights, no matter where
they live.

Paragraph 56 of Fair Access to Care Service guidance on
eligibility criteria for adult social care  (relating to a service
user moving from one council area to another) merely recommends
that the “receiving” council should take account of the services
that were previously received when they do assessments and make
decisions.  This is not binding and clearly urgently needs to be
made so if  disabled people, who live independently, are to be able
to move from one part of the country to another with the same ease
as their non- disabled peers.”

Margaret Behrman and Margaret Trotter

“One problem has been that the government brought out two
schemes and called them the same name, publicising one and leaving
local authorities to try to publicise their own. As a result, much
confusion has ensued. 

Would the government now do a national campaign for direct
payments quickly, highlighting the difference between the two and
letting all the general public know that if now, or anytime in the
future they find a need for social care – there is a different way
to receive it. 

It is perceived that only disabled people need to know of this
enabling route to providing care, but wider families, friends,
neighbours, communities should have the chance for
involvement. 

It is not viewed by the majority that disabled issues are
actually strong news stories and worthy of interest by the general
public. However, to make a service ‘user-led’ it needs to be known
about in the wider market place. Central government should cross
over the boundary of whose responsibility it is to tell the UK
about direct payments and put the word out for local
authorities. 

Those areas that have possibly been dragging their heals (and
bodies) over advertising this scheme would be forced to adequately
answer the ensuing enquiries.”

Fern Routledge
Direct Payments Support Worker