Transcript Practice Based Commissioning

Learning Disabilities
Introduction
How many people?
How well are their needs being met?
This presentation summarises information from a longer JSNA briefing
document “Social care needs of people with learning disabilities in
Derbyshire 2010/11” which provides more detailed data and analysis
including by district and age band and explores some issues in more
depth
http://www.derbyshire.gov.uk/Social_health/inspection_of_services/joint_needs assessment/default.asp
How many people are there with learning
disabilities in Derbyshire?
Planning4care* have estimated the number of people with a learning
disability by severity and district applying the best current methodology
including local risk factors as described in their report: ‘Learning
Disability strategic needs assessment for Derbyshire’. Severity of
learning disability is based on IQ.
In 2009 it was estimated that there are 12,871 people aged 18+ with a
learning disability of whom (Table 1);
• 10,505 (82%) have a mild or moderate learning disability (MLD)
• 2,101 (16%) a severe learning disability (SLD)
• 265 (2%) a profound and multiple disability (PMLD).
* Planning4care is a collaboration between ‘Oxford Consultants for Social Inclusion’ (OCSI) and ‘Care Equation’
Table 1: Estimated numbers of adults
with Learning Disabilities by severity
Adults aged 18 & over
Aged 18-64
Aged 65 & Over
TOTAL
PMLD
SLD
MLD
TOTAL
PMLD
SLD
MLD
TOTAL
PMLD
SLD
MLD
Derbyshire
12,871
265
2,101
10,505
10,400
232
1,842
8,326
2471
33
259
2179
Amber Valley
2,052
37
337
1,678
1,662
37
295
1,330
390
<10
42
348
Bolsover
1,492
23
222
1,247
1,208
23
195
990
284
<10
27
257
Chesterfield
1,928
31
294
1,603
1,558
31
258
1,269
370
<10
36
334
Derbyshire
Dales
959
20
172
767
741
20
146
575
218
<10
26
192
Erewash
1,872
34
308
1,530
1,532
34
272
1,226
340
<10
36
304
High Peak
1,458
29
250
1,179
1,202
29
222
951
256
<10
28
228
Derbys
hire
1,634
29
266
1,339
1,285
29
228
1,028
349
<10
38
311
Derbys
hire
1,442
29
252
1,161
1,212
29
226
957
230
<10
26
204
NE
South
Source: Planning4care: Learning Disability strategic needs assessment for
Derbyshire, Aug. 2009’
Table 2: Predicted change in numbers of adults
with a learning difficulty by severity
2009
2019
2029
Derbyshire
Derbyshire
Derbyshire
PMLD
% Change Derbyshire
2009-2029
50%
265
313
398
SLD
14%
2,101
2,255
2,392
MLD
19%
10,505
11,646
12,455
TOTAL
18%
12,871
14,214
15,245
Source: Planning4care: Learning Disability strategic needs assessment for Derbyshire, Aug. 2009’
Estimated growth of
people with learning disability
•
•
•
Between 2009 and 2029 the number of Derbyshire people with a learning
difficulty is predicted to grow by 18%
The numbers aged 65 + is projected grow by 67%
The numbers 18-64 are predicted to grow by some 7% over this period
NB. Detailed projections by age band and severity of disability, with comparison to the East Midlands and
England rate of change is available in the fuller briefing.
•
The other main learning disability data set available is the number of people claiming
Disability Living Allowance (DLA) care (Table 3 provides data on Derbyshire people aged
18-64 entitled to DLA care[2] and compares this to the Planning4care estimates above)
•
Whilst the Planning4care estimates of those aged 18-64 in England with a severe or
profound disability is 97% of the number entitled to DLA care, this reduces to 86% at the
Derbyshire level and becomes more erratic at district Level.
[2] DLA (Care) is for ‘attention required with bodily functions’ or ‘supervision’ required from others to
prevent risk to the claimant or others, or at its lowest rate for those who given the main ingredients cannot
cook a meal.
Comparing data sets
The difference between these two data sets will be partly due to the Planning4care
‘synthetic estimates’ being based on where people by district would normally live,
whereas the DLA data are based on actual district lived in 2009.
The availability of suitable accommodation in residential care and group homes causes
some displacement from district ‘of origin’. Additionally those on DLA lowest care will
include a proportion with mild or moderate learning disabilities (whilst not everyone
entitled to DLA will have claimed).
It will therefore be important for commissioners to have regard to both data sets, when
considering the local need for services and accommodation, as opposed to where
provision is currently located.
Table 3: People aged 18-64
entitled to disability allowance
The table below shoes people aged 18-64: Entitled to Disability Living
Allowance whose main disabling condition is a learning disability and
Planning4care (P4C) estimation of people with severe or profound Learning
Disabilities.
DLA care claimants - with main disabling
condition a learning difficulty
(Feb 2009)
P4C Severe or
Profound LDs (2009)
P4C severe or
profound LDs as % of
DLA care LDs
Amber Valley
310
332
107.1
Bolsover
330
218
66.1
Chesterfield
490
289
59.0
Derbyshire Dales
170
166
97.6
Erewash
320
306
95.6
High Peak
270
251
93.0
North East Derbyshire
290
257
88.6
South Derbyshire
220
255
115.9
2,400
2,074
86.4
152,440
148,006
97.1
Derbyshire
England
Source: DWP (Department of work and pensions 2009 (All DWP totals rounded to nearest 10)
Table 4: Estimated numbers of adults with
learning disability related conditions
NB. Asperger’s syndrome is a subset of autistic spectrum; and a person with Down’s syndrome might also
have challenging behaviour.
• People aged 18-64 with these respective conditions is expected to increase by 10.1% to 12.5% by 2029
• people aged 65+ with each of these conditions is expected to increase by over 60% by 2029
Asperger’s / HFA
Autistic spectrum
All adults
18-6
4
65+
All
adult
s
18-6
4
Challenging
behaviour
Down's syndrome
65+
All
adult
s
18-6
4
65+
All
adult
s
18-6
4
65+
Derbyshire
7,130
5,60
0
1,53
0
3,20
9
2,52
0
689
208
182
26
333
333
<10
Amber Valley
1,140
896
244
513
403
110
29
29
<10
53
53
<10
Bolsover
700
551
149
315
248
67
20
20
<10
33
33
<10
Chesterfield
951
747
204
428
336
92
26
26
<10
45
45
<10
Derbyshire Dales
652
486
166
294
219
75
14
14
<10
28
28
<10
1,029
817
212
463
368
95
27
27
<10
49
49
<10
High Peak
867
693
174
390
312
78
22
22
<10
41
41
<10
NE Derbyshire
928
705
223
417
317
100
23
23
<10
41
41
<10
South Derbyshire
862
704
158
388
317
71
22
22
<10
43
43
<10
41,069
32,7
78
8,29
1
18,4
81
14,7
50
3,73
1
1,25
2
1,11
1
141
2,03
4
2,00
7
27
467,569
375,
743
91,8
26
210,
406
169,
084
41,3
22
14,7
88
13,1
80
1,60
8
23,6
79
23,3
76
303
Erewash
East Midlands
England
Source: Planning4care: Learning Disability strategic needs assessment for
Derbyshire, Aug. 2009’ (HFA – High functioning autism)
Table 5: Estimated number of Derbyshire adults 18-64
with Down’s syndrome and/ or early onset dementia
Table 5 provides a comparison of estimates of the number of people with Down’s syndrome
and early onset dementia by age band. Most of those with early onset dementia are aged
50-64, whereas two thirds of those with Down’s syndrome are aged 25-49 years.
Estimated numbers with Down’s
syndrome (2009)
Estimated numbers with early onset
dementia (2009)
Estimated numbers with Down’s syndrome
and dementia (2009)
Number
% of 18-64
population
Number
% of 18-64
population
Number
% of 18-64
population
Adults aged 18-24
49
0.08
0
-
0
-
Adults aged 25-49
211
0.08
34
0.01
19
0.01
Adults aged 50-64
73
0.03
185
0.07
17
0.01
All people 18-64
333
0.07
219
0.05
36
0.01
Source: Planning4care: Learning Disability strategic needs assessment for Derbyshire, Aug. 2009’
Social Care Support - Adults
Provision of social care
support services in Derbyshire
Adult Care provided residential and/ or community services to 1,870 people aged
18+ (31 Mar 2009) - disregarding support to gain employment or ‘professional support’
only. This equates to;
• 500 people less than Planning4care estimated to have severe or profound learning
disabilities;
• 770 less than those people with learning disabilities entitled to disability living
allowance care or attendance allowance in February 2009 (although not all of these
claimants would be at the severe or profound level of severity).
NB. Some of this shortfall may be people known to Adult Care (who are well supported
by family carers).
Adult Care commissioners should consider if they are providing the services
needed by all those who require them, or whether there is significant unmet need.
It is unclear whether the reduction in Adult Care assessments and reviews has
contributed to this potential under provision.
Expected growth of people with
learning disabilities
Over the next 20 years;
•
•
•
the number of people aged 18-64 with a learning disability is expected to
grow by 7%
the number of people aged 65+ with a learning disability is expected to grow
by 67%
42% increase in the number of people aged 18-64 with a profound or
multiple learning disabilities (which by 2029 is predicted to total 328 people).
This has implications for the provision of services, particularly as older people
with learning disabilities will be disproportionately likely to develop other
conditions as well.
There is a need for commissioners to review if the services currently
provided for older people with learning disabilities and related conditions
will be able to meet the needs of this client group.
Expected growth of people with
learning disabilities
In Derbyshire, the following number of people are estimated to have a learning
disability, however it is unclear how many are receiving Adult Services;
•
•
•
7,130 people aged 18+ with autistic spectrum disorder
208 adults with challenging behaviour
333 adults with Down’s syndrome
‘Services were being provided to 198 people with autistic spectrum disorder of
whom 178 also had learning disabilities. Secondary client data on disability on
the client database (framework i) is currently inadequate for purpose and there
is a need for this to be restructured so that it is clearer what principle and
secondary disabilities clients have.’
(Departmental Audit, October 2008)
Needs and challenges of people with
learning disabilities
Need:
There are an estimated 10,505 people aged 18+ with mild or moderate
learning disabilities (of whom 2,179 are aged 65+). These citizens (who are not
social care clients) will have different needs and challenges to live their lives.
Challenge:
• It is unclear at present that there is coordinated action to identify and
address their needs. Whilst within the ‘Making Care Personal’ programme
there will be access for any citizen to access information and services
available to all people, this will not necessarily address the needs of this
group specifically, some of whom will find access to information itself more
difficult
•
The needs of these people, including the need for (preventative) services to
address issues of vulnerability, need to be addressed through existing inter
agency partnerships.
Table 6: Adult Care Spend by major
activity (Learning Disability)
The table below shows the total cost of Adult Care residential and community services in
2008/9 (including staffing) for people with learning disabilities was £50.5 million.
Learning Disabilities: By main areas of net expenditure
2008/9
% of total spend in 2008/9
Homecare
£
8,462,261
16.8%
Daycare
£
15,031,222
29.8%
Direct Payments
£
1,259,889
2.5%
Residential Care Homes & in house respite (net)
£
12,800,740
25.3%
Nursing Homes (net)
£
2,472,469
4.9%
In House Residential (net)
£
3,225,991
6.4%
08/9 Other (including other services)
£
7,258,848
14.4%
Total
£
50,511,420
100.0%
Source: Adult Care Finance, September 2009.
Notes:
i) In house residential includes in house respite care (egg Cedar Avenue, Ripley).
Ii) Total residential and nursing home expenditure made up 44.4% of total spend.
iii) Derbyshire PCT spent £32 million in total on learning disability clients through the commissioning of services from Derbyshire Mental
Health Trust and Derbyshire Community Heath Services and payments in respect of individual patients. Approximately £13 million was
on broadly social care functions.
Figure 1: % of Total Expenditure on Services
for Learning Disabled Adults (18-64)
In 2007/8 Derbyshire Adult Care was 6th of its 15 comparator social services authorities
on the proportion of its budget for 18-64 year olds spent on services for adults aged 18- 64
with learning disabilities (and slightly above the England and East Midlands averages).
Community and residential services
•
The majority of the 1,870 people receiving a community or residential
service at the end of 2008/ 09 lived in the community (with 607 clients in
2008/ 09 living in residential or nursing homes)
•
In May 2009 at least 478 clients lived with their families and some 454 in
supported living accommodation (group homes) – See table 7.
•
Key care services in the community include home care (or direct payments
to enable people to buy their own care), day care, and residential and
nursing homes (where people receive care in the residential setting).
Table 7: Summary of Adult Care
provision in 2008 / 09
Key Adult care provision for people
People
Number of clients living in:
Home Care
603
Adult Placements
55
Direct Payments
152
Supported Living Accommodation
454
Day care
914
Living at home with family – At least
478
Residential or Nursing homes
607
Residential or Nursing homes
607
Source: Management Information, Adult Care
Notes:
i) Above ‘provision data’ can’t be totalled as some clients receive more than one type of provision.
ii) 478 is thought to be an undercount of clients living with family. At least 60 clients are in living alone.
ii) Number living in ‘supported living accommodation (or group homes) from
Adult Care audit in October 2008. Supported living accommodation involves people sharing 2 – 5 bed roomed
properties, but with their own tenancy agreement. They will receive required community services in as per their
assessed need.
Table 8: Adults with Learning Disabilities in
Residential Accommodation during 2008/ 09
•
•
•
In 2008/ 09 there were 607 clients living in residential or nursing homes
The proportion of Derbyshire learning disability clients in residential or nursing homes
increases substantially with age from 23.8% of 18-24 year olds to 77.2% of those
aged 75+
Compared to Derbyshire’s 15 other comparator authorities, England, or the East
Midlands in 2007/ 08 Derbyshire has a slightly lower percentage of its adults with
learning disabilities in residential or nursing home care. Derbyshire did, however, have
the second highest proportion of clients aged 18-64 in nursing homes and the highest
rate for clients aged 65+.
Age Band
18-24
25-49
50-64
65-74
75+
Total
% reduction
from 2006/7
Residential Care Homes
34
202
124
39
22
421
1.0
DCC Residential Hostels
5
17
15
6
7
50
-12.3
Nursing Homes
0
56
42
22
16
136
-11.7
Total
39
275
181
67
45
607
-3.3
Type of Care
Nursing homes and
residential care homes
•
Nursing homes are generally less costly than residential care homes. The net cost to
the department of clients in residential care homes is more than five times the cost of
nursing homes (Mar 2009)
•
There has been a 3% reduction in the number of Adult Care clients living in
residential or nursing homes (2008/09)
•
Adult Care aims to reduce the proportion of clients in both residential and nursing
homes
•
There is a need to start commissioning some places in the community based on the
known accommodation and care packages of people who have moved from
residential or nursing care over the past 3 years
•
Adult Care has developed a 3 year project ‘Getting a home of my own’
•
The number of adult placements for people with learning disabilities nearly doubled
from 38 in 2006/7 to 71 in 2007/8 but reduced to 55 in 2008/9.
Figure 2: Adults with learning disabilities
helped to live at home
Derbyshire was 10th of its other 15 comparator authorities in the relative proportion of
people with learning disabilities aged 18-64 it helped to live at home (but higher than the
England, East Midlands, and Shire county average).
Home care and direct payments
Info would be best displayed in graph from
with bullets (page 62/3).
Day Care
•
914 people attended day centres in 2008/9 (67% of those receiving a community
service)
•
Only 29% of 18-25 year olds attended day care, representing an increasing number
in education or other options
•
Derbyshire provided a higher proportion of day care to its people than all but 6 of its
15 comparator authorities, although between 2006/ 07 the number of people locally
attending day care reduced by 4% (march 2008)
NB. If the number of people in residential care is to be reduced this will create an
additional need for day care, although in time this may be mitigated by an
increasing number of service users taking up other ‘self directed support’ options
that will become increasingly available under Adult Care’s Making Care Personal’
initiative.
Assessments and reviews
The rapid reduction in the number of social care reviews by 31% over the 3
years to 2008/ 09 is not related to a fall in the number of clients receiving a
service. This means that services will not necessarily be related to people’s
changing needs.
It is unclear why the number of social care assessments has reduced over the
same period by 26%, especially as this does not correlate with a reduction in
referrals; and it is not clear whether this relates to the shortfall identified above
between the estimated numbers of people with severe or profound learning
disabilities as compared with those receiving services. Adult Services
managers may wish to give consideration to these issues.
Carers of people with Learning
Disabilities
•
There are neither data nor estimates on the number of carers of people with
learning disabilities. Currently there is little data available on the Adult Care
Framework i database regarding the number of family and other informal
carers of clients with learning disabilities, nor on assessments undertaken
by Adult Care on carers, nor the services provided to carers. Adult Care
have recognised this data shortfall and there is a commitment to record
these data.
•
‘Short breaks’ for people with learning disabilities are principally provided to
offer respite to carers. 223 people had short breaks in 2008 / 09 and the
numbers of people who had them had increased by nearly a fifth since 2006
/ 07 across the county. Some 16.3% of people who received a community
service in 2008/ 09 also had one or more short break.
•
Adult Care is committed to identify hidden carers and raise the profile of
carers so that they are valued, supported and consulted. Adult Care will
develop further staff training and extend the number of carers receiving
assessments. Peer-support will be available and short breaks for carers will
be developed. A Carers Commissioning group is to be established.
Social Care Support –
Young People aged 14-17 years
Table 9: Estimated growth in number of young people
in Derbyshire aged 14-17 with Learning Disabilities Derbyshire, Region and England
Derbyshire
2009
PMLD
Derbyshire
2019
Derbyshire
2029
% Change
Derbyshire 20092029
% Change East
Midlands 20092029
% Change
England 20092029
22
21
29
32%
44%
42%
SLD
174
152
174
0.0%
8.4%
6.9%
MLD
737
632
693
-6.1%
1.8%
0.5%
TOTAL
933
805
896
-4.0%
3.9%
2.5%
Of the estimated 933 young people with learning disabilities;
• 737 (79%) are estimated to be mild or moderate
• 174 (19%) severe
• 22 (2%) profound and multiple.
NB. Whilst the numbers with mild or moderate learning disabilities are predicted to
reduce by 6% by 2029, there is little predicted change in the number with severe or
profound and multiple learning disabilities.
Table 10: Estimated number of 14-17 olds
with Learning Disabilities, by condition
The following table provides estimates of the number of young people with related
conditions, which are not mutually exclusive, including numbers with autistic spectrum,
which will include those with Asperger’s syndrome and ‘high functioning autism.’
2009
2019
2029
% change
Derbyshire
2009-2029
% change
East
Midlands
2009-2029
% change
England 20092029
Autistic spectrum
468
412
469
0.2%
8.8%
7.1%
Asperger’s/ HFA
211
185
211
0.0%
8.8%
7.1%
Challenging behaviour
17
15
17
0.0%
8.3%
6.9%
Down’s syndrome
32
28
32
0.0%
9.0%
7.3%
Source: Planning4care: Learning Disability strategic needs assessment for Derbyshire, Aug. 2009’ (HFA - High functioning
autism)
Young People with learning difficulties supported by
Special Educational Needs (SEN) Statements
Supporting statistics for Table 11:
In Derbyshire young people between 14-17 with SENs;
• 368 with an SEN statement based on learning difficulties
• 514 young people with a learning difficulty or other related condition such as
autism, severe communication difficulty or a specific learning difficulty which
was not a learning disability
Planning4care estimated that young people between 14-17 with SENs
in Derbyshire;
• 933 with a learning disability
• Young people with SEN statements based on learning disability as their
primary or secondary condition account for over a third of these (39.4%)
NB not all stats have been included above as difficult to show as bullets.
Best to use table 11 and talk around it.
• Table 11 too large to put on PP.
Social Care and ‘Transitions’
Info on page 67 best displayed as a table/ graph
Summary of key recommendations for commissioning
services for people with learning disabilities
•
Adult Care commissioners and analysts should consider the apparent ‘care deficit’
between the Planning4care estimate of the number of people with severe or profound
learning disabilities and those provided with tangible care services and
accommodation by Adult Care
•
Commissioners may wish to review whether current provision for people with learning
disabilities will meet the future needs and determine what provision will be required to
meet increased need
•
Commissioners to consider partnership initiatives to address the range of needs of
the estimated 10,505 people aged 18+ with mild and moderate disabilities in order to
develop a coordinated inter-agency response to support the vulnerable
•
Information on support available to be communicated to a range of agencies
•
Need for PCT data on health provision for people with learning disabilities and
improved data from Adult Care on the learning disabilities and related conditions of
clients; accommodation clients live in, and whether that represents their choice of
accommodation; and on assessments and services provided to carers who provide
informal care
Summary of key recommendations for commissioning
services for people with learning disabilities cont.
•
For clients in residential care there is a need for data on whether they wish to move
out of residential or nursing care; and what provision is needed in the community to
support the ‘Getting a Home of My Own’ project
•
Commissioners to secure the necessary care and accommodation to expedite the
opportunities for more people to live more fulfilled lives in the community
•
Ensure residential and nursing accommodation meets clients’ needs and is available
as locally as possible
•
Explore the implications of the variable cost of residential and nursing care
•
Commissioners to expect an increase in the amount that needs to be commissioned
(dependant on the speed of take up of other ‘self directed care’ options within the
‘Making Care Personal’ initiative)
•
Adult Care commissioners need to consider if the substantial reduction in Adult Care
assessments and reviews is having an impact on meeting the (evolving) needs of
clients and potential clients.
Summary of key recommendations for commissioning services
for people with learning disabilities cont.
•
It is interesting to note that slightly less than half the estimated young people between
14 and 17 years with severe learning disabilities have Special Educational Needs
(SEN) statements, with the remainder presumably not requiring them
•
At the 1.11.2009 there were slightly more young people of 14-17 age band with
learning difficulties known to CAYA social care (201) than the Planning4care estimate
of those with severe or profound and multiple learning disabilities (196). There were,
however, some 68 young people (or 35% of the 196 young people estimated by
Planning4care to have profound or severe learning disabilities) who were not
receiving tangible support from CAYA social care at that time, or who were receiving
all the support they need through their family. This potential ‘care deficit’ needs further
exploration by CAYA commissioners
•
Planning4care estimate that 737 Derbyshire young people aged 14-17 have mild or
moderate disabilities. Existing partnership initiatives (including Connexions) are
seeking to address the needs of young people with a mild or moderate learning
disability before 18 years; and it will be important that the ‘transition arrangements’
that are in place enable appropriate support to be provided where necessary after 18
years of age.