Transcript Document

Parents as commissioners
Dr Glenys Jones and Elaine Hack
Vineyard, Nottingham
15th May 2007
Aims of the study
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To explore the extent to which parents are
involved in commissioning services
To identify the issues involved for authorities
in enabling parents to commission services
To make recommendations on how parents
and authorities can be supported in
increasing parental involvement in
commissioning
Definitions
Individual budgets
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‘A system which involves streamlined assessment
across agencies responsible for a number of support
funding streams, resulting in the transparent
allocation of resources to an individual, in cash or in
kind, to be spent in ways which suit them.’ (Social
Care Institute for Excellence, 2007)
Direct Payments a part of this – largely for support
at home – introduced in 1997
AIM: to empower service users and control the
spiralling costs of traditional care (SCIE, 2007).
Methods used to collect data
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5 families from each of the 9 LAs identified by PPS to
be interviewed/to complete a questionnaire
Focus groups held with parents to discuss issues
Those involved in commissioning interviewed/to
complete a questionnaire
Analysis of websites and documents produced by the
9 LAs on commissioning and Direct Payments
Literature review on research in this area – UK and
internationally
Questions to parents 1
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Level of satisfaction today
What has most helped your child?
What has most helped you as parents?
Educational history and involvement
Breaks away for the child/holiday
activities
DLA and DP
Questions to parents 2
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What would you like to have been
different?
What would make a difference to your
child?
What would make a difference to you
as a family?
Same money – how would you spend
it?
Questions to commissioners
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Current use of DPs
Calculation of DPs and maximum
Promotion of DPs
Support for parents in using DPs
Payment of DPs
Potential benefits/issues
Involvement of parents in commissioning
Findings to date from parents and those
involved in commissioning
PARENTS
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30/45 parents have
been interviewed or
completed a
questionnaire
6 families had more
than one child with
ASD
24 boys 6 girls
Age
Number
Under 5
5
6 to 10
11
11-15
10
16+
4
TOTAL
30
Knowledge and Use of Direct Payments
Not heard of DP
17
Heard of DP, but not
using these
8
Using DP
5
Total
30
Issues arising from parent
interviews
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There is a ‘team around the child’ – but they
do not work as a team – little or no evidence
of keyworker system
‘We would like honesty, knowledge,
competence, cohesion and lots of
money.’
Different practices in informing parents
re DP
Support which parents would
value
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Befrienders in the evenings and weekends
Sitting service
Holiday activities
Overnight stay for child
Appropriate social contacts – as parents tend
to be their only friend
Back up when a crisis – not just the Police!
More advice on the help you can get –
financial/ physical/ emotional
Views on DP by parents
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Would like to be able to pay relatives
‘SW told us about it (we have 2 boys) – but
seemed a mountain of paperwork;
interviewing; CRB checks and effort’
‘We understand that because of his
exceptional needs and the need for a high
staffing ratio – we would need to make up
the financial shortfall in funding – Could we
find staff willing to put up with his behaviour
for £7 an hour?’
Family factors and assessment of
need
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Parents may have other demands which
affect ability to manage and live with
child – does assessment/costing
formula reflect this? (eg housing; other
family demands; finance; support from
family members)
Particular issues in ASD
Demands of living with children with ASD are harder to
assess than other conditions such as physical
disability as
Demands change with time; child can require much
higher levels of supervision; often emotionally and
physically draining; may not be around self-care; may
involve harm to self or others; constant verbal
challenges may be the most difficult/tiring for
parents; behaviour of child very much affected by
situation and people within it – ie dependent on
context
AND will vary with the tolerance levels of parents and
their understanding of their child and family support
and resources
Issues around DPs
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Advantaged may be more advantaged by this system
– how do we protect the interests of ALL parents and
children and ensure equity?
Professionals anxious about involving parents more –
time-consuming; challenging; expensive
Resources are finite – so how can we encourage
parents to be reasonable in their claims? – although
services procured by families may be cheaper
In ASD payment may need to be more flexible to
address times of crisis – rather than a fixed monthly
or yearly amount
A parent’s comment on DP
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Heard of it from a parent
Don’t know how to apply
Do I need a social worker to get it?
Don’t know what the criteria are
Would it affect any other payments?
Personal assistants: concerns
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Are generally low paid, female, work
anti-social hours, not specifically
trained, ill-defined job description, lack
external advice and support and may
face very challenging situations
So may be a high turn-over; risk to the
child and family; high stress for the PA
Personal assistants: positives
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Flexible
Part time
Local
Fulfilling
Closer emotional ties with the family
and service user
May lead to another career
Potential benefits of DPs
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Support at home may be less expensive
than support within a Unit and it is
already customised for the child
Extended schools – offer great
opportunities – DP to pay for support –
eg SPACE groups (Support and Play for
Autistic Children to Enjoy)
Payment to families – how?
Is it?
 A lump sum which they can use in any way
 A defined budget which has to be accounted
for
 Expenditure reimbursed with or without a
ceiling
 Vouchers for specific services
 Credit system – using a credit card
If I could choose what money
was spent on?
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Private education
Interview his LSAs myself
Don’t feel we get much extra
Support in m/s school
3 acres of land with planning permission
Appropriate interventions not just managed
Pay me to teach him at home
Information from the LA websites
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Conditions attached
Spend it on services the authority agreed
they would provide following an assessment
Keep account of the money
Agree to show us what the money has been
spent on – Derbyshire asks for an account of
this every 4 weeks – Leics suggest a separate
bank account for these payments
Spend it on ways that keep your child safe
and well
Advice from the websites
Before you employ a worker:
 Ensure they are suitable for the job
 Arrange a proper contract of employment
 Northants mentions CRB check – Notts does not
 Northants can refuse DP if it feels the parents is not
‘capable of managing the payments’
 Northants – need to abide by employment law – eg
‘register with the Inland Revenue and having
employers insurance if you employ personal
assistants to care for your child.’
Findings from other research 1:
Parents/carers of children with disability – have
received DP less often than other groups
(along with the elderly and those with mental
health problems).
Many schemes in Europe have been set up based
on an inadequate assessment of demand and
set up costs – which have caused problems
later AND unmet needs are often uncovered –
which can ‘overwhelm new systems’.
Findings from other studies 2:
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‘Clarifying the role, qualifications, skills,
employment conditions, training and
pay of personal assistants is central to
the success of most schemes.’ SCIE,
2007)
Findings from other studies 3:
Professional anxiety
 Change always brings anxiety – but can
be minimised by information, training
and good policy guidelines
 Good models of effective practice
elsewhere – and costs and benefits for
all will help
Findings from other studies 4: reasons for
limited promotion of DP in the UK
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Need for better information and training
Reluctance to relinquish power, fear of deskilling and
job losses
Concerns about risk
Concern about costs – especially start up costs
Lack of strategies generally and experience in userinvolvement
Uncertainty about the capacity of service users and
paternalism
Findings from other studies 5: reasons for
limited promotion of DP in the UK
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Findings suggest that those ‘local authorities that are
generally committed to the provision of intensive
community care provide more intensive DP
packages.’
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‘Local authorities performing ‘best’ according to
current Commission for Social Care Inspection
performance standards tend to spend LESS on each
DP recipient than poorer performing authorities with
fewer DP recipients’
Findings from other studies 6: use of
relatives
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The organisation In Control which helps service users
access DP has found that:
where relatives have been paid (in exceptional
circumstances), there have been few problems
Findings from other studies 7:
Brokerage
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Brokerage has been a response to the need to
support recipients of DPs and IBs – a service to give
advice and administrative support - but again there is
a need to define the role, recruitment, costs, training,
pay and employment status of those who provide this
service.
2004 survey of SSDs in England showed almost all
had funded such a service – only 10 of which were
in-house – most independent and a few run by
service-users.
Findings from other studies 8:
support needed by parents/users
of DP
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To access the scheme
To manage the money, budget and
accounts
To identify and access the required
services
To employ and manage staff
Extract from
Wendy Lawson’s poem
The future
‘My future may not depend on my stock
So much as it does upon sources
Sources of warmth, sources of care
I depend on the nurture to be for me there.’
Finally
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If you know someone in your authority
who you think we should interview – a
family or a professional – OR there are
questions you would like us to address,
then email me at
[email protected]