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/inspection_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 Aged 18 ‑ 64 Aged 65 & Over TOTALPMLDSLDMLDTOTALPMLDSLDMLDTOTALPMLDSLDMLD Derbyshire12,8712652,10110,50510,4002321,8428,3262471332592179 Amber Valley2,052373371,6781,662372951,330390<1042348 Bolsover1,492232221,2471,20823195990284<1027257 Chesterfield1,928312941,6031,558312581,269370<1036334 Derbyshire Dales9592017276774120146575218<1026192 Erewash1,872343081,5301,532342721,226340<1036304 High Peak1,458292501,1791,20229222951256<1028228 NE Derbys hire1,634292661,3391,285292281,028349<1038311 South Derbys hire1,442292521,1611,21229226957230<1026204 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 200920192029% Change Derbyshire 2009-2029 Derbyshire PMLD 265313398 50% SLD 2,1012,2552,392 14% MLD 10,50511,64612,455 19% TOTAL 12,87114,21415,245 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 care[2] and compares this to the Planning4care estimates above)[2] 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[2] 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.

8. 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 310332107.1 Bolsover 33021866.1 Chesterfield 49028959.0 Derbyshire Dales 17016697.6 Erewash 32030695.6 High Peak 27025193.0 North East Derbyshire 29025788.6 South Derbyshire 220255115.9 Derbyshire 2,4002,07486.4 England 152,440148,00697.1 Source: DWP (Department of work and pensions 2009 (All DWP totals rounded to nearest 10) 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. Table 3: People aged 18 ‑ 64 entitled to disability allowance

9. Table 4: Estimated numbers of adults with learning disability related conditions Source: Planning4care: Learning Disability strategic needs assessment for Derbyshire, Aug. 2009’ (HFA – High functioning autism) Autistic spectrumAsperger’s / HFAChallenging behaviour Down's syndrome All adults 18 ‑ 6 4 65+All adult s 18 ‑ 6 4 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 68920818226333 <10 Amber Valley 1,14089624451340311029 <1053 <10 Bolsover 7005511493152486720 <1033 <10 Chesterfield 9517472044283369226 <1045 <10 Derbyshire Dales 6524861662942197514 <1028 <10 Erewash 1,0298172124633689527 <1049 <10 High Peak 8676931743903127822 <1041 <10 NE Derbyshire 92870522341731710023 <1041 <10 South Derbyshire 8627041583883177122 <1043 <10 East Midlands 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 England 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 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

10. Table 5: Estimated number of Derbyshire adults 18 ‑ 64 with Down’s syndrome and/ or early onset dementia 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 18-24 490.080 - 0 - Adults aged 25-492110.08340.01190.01 Adults aged 50-64730.031850.07170.01 All people 18-643330.072190.05360.01 Source: Planning4care: Learning Disability strategic needs assessment for Derbyshire, Aug. 2009’ 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.

11. Social Care Support - Adults

12. 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. Provision of social care support services in Derbyshire

13. 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.

14. 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) Expected growth of people with learning disabilities

15. 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.

16. 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 expenditure2008/9% of total spend in 2008/9 Homecare £ 8,462,26116.8% Daycare £ 15,031,22229.8% Direct Payments £ 1,259,8892.5% Residential Care Homes & in house respite (net) £ 12,800,740 25.3% Nursing Homes (net) £ 2,472,4694.9% In House Residential (net) £ 3,225,9916.4% 08/9 Other (including other services) £ 7,258,84814.4% Total £ 50,511,420100.0% 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.

17. 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).

18. 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).

19. Table 7: Summary of Adult Care provision in 2008 / 09 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. Key Adult care provision for peoplePeople Number of clients living in: Home Care603 Adult Placements55 Direct Payments152 Supported Living Accommodation454 Day care914 Living at home with family – At least478 Residential or Nursing homes607 Residential or Nursing homes607

20. 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+. Type of Care Age Band % reduction from 2006/7 18-2425-4950-6465-7475+ Total Residential Care Homes3420212439224211.0 DCC Residential Hostels517156750-12.3 Nursing Homes056422216136-11.7 Total392751816745607-3.3

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 Care’s 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 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.

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

28. Table 9: Estimated growth in number of young people in Derbyshire aged 14 ‑ 17 with Learning Disabilities - Derbyshire, Region and England 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. Derbyshire 2009 Derbyshire 2019 Derbyshire 2029 % Change Derbyshire 2009- 2029 % Change East Midlands 2009- 2029 % Change England 2009- 2029 PMLD 222129 32%44%42% SLD 174152174 0.0%8.4%6.9% MLD 737632693 -6.1%1.8%0.5% TOTAL 933805896 -4.0%3.9%2.5%

29. 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.’ 200920192029% change Derbyshire 2009-2029 % change East Midlands 2009-2029 % change England 2009- 2029 Autistic spectrum 4684124690.2% 8.8%7.1% Asperger’s/ HFA 2111852110.0% 8.8%7.1% Challenging behaviour171517 0.0% 8.3%6.9% Down’s syndrome 3228320.0% 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. 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.

35. 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. Summary of key recommendations for commissioning services for people with learning disabilities cont.