Learning Disabilities

1
Learning Disabilities
2
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/inspect
  ion_of_services/joint_needs assessment/default.asp

3
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

4
Table 1 Estimated numbers of adults with
Learning Disabilities by severity
  Adults aged 18 over Adults aged 18 over Adults aged 18 over Adults aged 18 over Aged 18-64 Aged 18-64 Aged 18-64 Aged 18-64 Aged 65 Over Aged 65 Over Aged 65 Over 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 lt10 42 348
Bolsover 1,492 23 222 1,247 1,208 23 195 990 284 lt10 27 257
Chesterfield 1,928 31 294 1,603 1,558 31 258 1,269 370 lt10 36 334
Derbyshire Dales 959 20 172 767 741 20 146 575 218 lt10 26 192
Erewash 1,872 34 308 1,530 1,532 34 272 1,226 340 lt10 36 304
High Peak 1,458 29 250 1,179 1,202 29 222 951 256 lt10 28 228
NE Derbyshire 1,634 29 266 1,339 1,285 29 228 1,028 349 lt10 38 311
South Derbyshire 1,442 29 252 1,161 1,212 29 226 957 230 lt10 26 204
Source Planning4care Learning Disability
strategic needs assessment for Derbyshire, Aug.
2009
5
Table 2 Predicted change in numbers of adults
with a learning difficulty by severity
  2009 2019 2029 Change Derbyshire 2009-2029
  Derbyshire Derbyshire Derbyshire Change Derbyshire 2009-2029
PMLD 265 313 398 50
SLD 2,101 2,255 2,392 14
MLD 10,505 11,646 12,455 19
TOTAL 12,871 14,214 15,245 18
Source Planning4care Learning Disability
strategic needs assessment for Derbyshire, Aug.
2009
6
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 care2 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.

7
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.

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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
Derbyshire 2,400 2,074 86.4
England 152,440 148,006 97.1
Source DWP (Department of work and pensions 2009
(All DWP totals rounded to nearest 10)
9
Table 4 Estimated numbers of adults with
learning disability related conditions

• NB. Aspergers syndrome is a subset of autistic
  spectrum and a person with Downs 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

  Autistic spectrum Autistic spectrum Autistic spectrum Aspergers / HFA Aspergers / HFA Aspergers / HFA Challenging behaviour Challenging behaviour Challenging behaviour Down's syndrome Down's syndrome Down's syndrome
All adults 18-64 65 All adults 18-64 65 All adults 18-64 65 All adults 18-64 65
Derbyshire 7,130 5,600 1,530 3,209 2,520 689 208 182 26 333 333 lt10
Amber Valley 1,140 896 244 513 403 110 29 29 lt10 53 53 lt10
Bolsover 700 551 149 315 248 67 20 20 lt10 33 33 lt10
Chesterfield 951 747 204 428 336 92 26 26 lt10 45 45 lt10
Derbyshire Dales 652 486 166 294 219 75 14 14 lt10 28 28 lt10
Erewash 1,029 817 212 463 368 95 27 27 lt10 49 49 lt10
High Peak 867 693 174 390 312 78 22 22 lt10 41 41 lt10
NE Derbyshire 928 705 223 417 317 100 23 23 lt10 41 41 lt10
South Derbyshire 862 704 158 388 317 71 22 22 lt10 43 43 lt10
East Midlands 41,069 32,778 8,291 18,481 14,750 3,731 1,252 1,111 141 2,034 2,007 27
England 467,569 375,743 91,826 210,406 169,084 41,322 14,788 13,180 1,608 23,679 23,376 303
Source Planning4care Learning Disability
strategic needs assessment for Derbyshire, Aug.
2009 (HFA High functioning autism)
10
Table 5 Estimated number of Derbyshire adults
18-64 with Downs syndrome and/ or early onset
dementia

• Table 5 provides a comparison of estimates of the
  number of people with Downs 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 Downs
  syndrome are aged 25-49 years.

Estimated numbers with Downs syndrome (2009) Estimated numbers with Downs syndrome (2009) Estimated numbers with early onset dementia (2009) Estimated numbers with early onset dementia (2009) Estimated numbers with Downs syndrome and dementia (2009) Estimated numbers with Downs 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
11

• Social Care Support - Adults

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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.

13
Expected growth of people withlearning
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.

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Expected growth of people withlearning
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 Downs 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)

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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.

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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.
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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).

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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).

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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 cant 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.

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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 Derbyshires 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.

Type of Care Age Band Age Band Age Band Age Band Age Band   reduction from 2006/7
Type of Care 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
21
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.

22
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).

23
Home care and direct payments

• Info would be best displayed in graph from with
  bullets (page 62/3).

24
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 Cares Making Care Personal
• initiative.

25
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 peoples
• 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.

26
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.

27

• Social Care Support
• Young People aged 14-17 years

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Table 9 Estimated growth in number of young
people in Derbyshire aged 14-17 with Learning
Disabilities - Derbyshire, Region and England
Derbyshire 2009 Derbyshire 2019 Derbyshire 2029 Change Derbyshire 2009-2029 Change East Midlands 2009-2029 Change England 2009-2029
PMLD 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.

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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 Aspergers syndrome
  and high functioning autism.

2009 2019 2029 change Derbyshire 2009-2029 change East Midlands 2009-2029 change England 2009-2029
Autistic spectrum 468 412 469 0.2 8.8 7.1
Aspergers/ HFA 211 185 211 0.0 8.8 7.1
Challenging behaviour 17 15 17 0.0 8.3 6.9
Downs 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)
30
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.

31

• Table 11 too large to put on PP.

32
Social Care and Transitions

• Info on page 67 best displayed as a table/ graph

33
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

34
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.

35
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.