Learning Disabilities Needs Assessment Warwickshire Joint Strategic Needs Assessment 2014 Emma Adams

Background 2 The needs assessment was started in April 2013 to coincide with the end of Warwickshire’s Learning Disability Strategy Its aim was to inform the production of a new Learning Disability Strategy covering the period from 2015 to Commissioners will benefit from having access to robust evidence in order to support or question the applicability of suggested models of care for people with learning disabilities, and highlight any key issues within Warwickshire.

Prevalence of Learning Disabilities 3 There is currently no definitive national record or statistical collection of the number of people with a learning disability. Any figures published on the true prevalence of learning disabilities are based on estimations rather than actual figures. The total estimated 'true' prevalence of all people with a learning disability in Warwickshire in 2013 was 11,030 of whom 9,469 are adults aged 18+ and 1,561 are children and young people aged 0-17 years.

Prevalence of Learning Disabilities - Children 4 1,143 pupils in Warwickshire between 4 and 19 years were identified as having a SEN statement of learning disability, of which 74.7% had a moderate learning disability, 23.3% had a severe learning disability & 2.0% had a profound/multiple learning disability. The number of children with a SEN statement of learning disability increases with age until peak incidence at 14 years, followed by a decline.

Prevalence of Learning Disabilities - Adults Differences in the estimations of adults in Warwickshire with a learning disability. Approximately two-thirds of adults with learning disabilities expected to be in contact with social services are receiving a service from social care in Warwickshire. 5

Data Recommendations Many of the recommendations made in the Needs Assessment relate to data; sometimes the way in which information is recorded, others the lack of recording. Develop a local register of those people with a diagnosed learning disability which is timely and accessible to both health and social care colleagues. Parents and neonates with a learning disability recorded in the Maternity Services Data Set must be added/matched to the proposed local register and brought to the attention of Warwickshire's SENDAR team. IT support is required to ensure that Health Checks & Health Action Plans are integrated within GP operating systems in order to prevent this being a barrier to their completion. SLA between commissioned services & WCC to ensure accurate data capture from providers 6

Health Inequalities People with learning disabilities have significantly worse health than their non-disabled peers. Access to the NHS for people with learning disabilities is poor, leading to undiagnosed illness & in some cases, avoidable death. 1,770 adults with learning disabilities in Warwickshire were identified as eligible for an Annual Health Check in 2013/14, of which 57.5% went on to have one. Significantly higher than the England and West Midlands averages at 44.2% and 46.0% respectively. Only 44.0% of adults with learning disabilities in Warwickshire had a Health Action Plan completed (779 adults with learning disabilities out of 1,770 eligible). 7

Cancer Screening Cervical cancer screening: Out of 242 women with learning disabilities in Warwickshire who were eligible for screening only 62 had received a cervical smear test in the past 5 years. 25.6% compared with 75.8% of Warwickshire's general population Breast cancer screening: Out of 126 women with learning disabilities in Warwickshire who were eligible for screening only 19 had mammographic screening in the past 3 years. 15.1% compared with 77.5% of Warwickshire's general population Bowel cancer screening: Out of 97 people with learning disabilities in Warwickshire who were eligible for screening only 23 had satisfactorily completed bowel cancer screening within 6 months of invite. 23.7% compared with 62.0% of Warwickshire's general population 8

Recommendations to Reduce Health Inequalities Health checks and health action plans for all adults with learning disabilities in Warwickshire Raise awareness of the dangers of obesity-related health problems, such as coronary heart disease, stroke and diabetes. Joined up health and social care for parents with learning disabilities to ensure that they receive the support that they need. Promote access to healthy lifestyle initiatives and services through schools and the community. Actioned through: SAF Action Plan Statement of Intent Fast-track bid 9

Accommodation All people with a learning disability should have the opportunity to live in an ordinary street in an ordinary house, just like everybody else... The number of people with a learning disability living in residential settings has decreased from 2012/13 to 2013/14, whilst the number of people living independently is increasing however /14 ASCOF measures show that Warwickshire is currently in the bottom 25% of all councils in England for the number of working age learning disability customers who live on their own or with their families. 67.4% vs National Average of 74.8% (In 2014/15, provisional data is showing that Warwickshire's position has improved (73.5%) but still lower than England 2013/14.) 10

Warwickshire Learning Disability Customers by Tenure Type, 2012/13 & 2013/14 CareFirst data shows that the number of WCC social care customers with LD living in a residential care home has decreased by 5% from 2012/13 to 2014/15. Shift towards supported accommodation such as Extracare and Shared Lives schemes, enabling people with LD to live more independently. Increase in the number of people with LD living as a tenant in privately rented accommodation Slight decrease in the number of people with LD who are living in their own homes (owner occupier or shared ownership) Accommodation 11

Customers who are currently placed out of area will be supported to move back to Warwickshire where appropriate Housing initiatives which give people with learning disabilities independence such as Extracare should continue to be prioritised. Support people to live at home with their families, if this is their choice Housing Recommendations 12

“Starting with a person with individual strengths, preferences & aspirations, giving people choice & control over their lives.” Personalisation In 2013/14, 22% of people with a learning disability known to social services received a direct payment in Warwickshire. This is an increase of 61% in the past 2 years. Flexibility at the cost of insight? Commissioners will not have access to data regarding what people with learning disabilities in contact with social care are spending their direct payments on – this will impact future service planning. 13

Commissioners must seek to come up with innovative and engaging ways to develop people's understanding and awareness of the benefits of self-directed support. Commission a programme of re-assessment and review of individuals with learning disabilities in Warwickshire. Develop person-centered support plans to enable individuals and their families identify what is important to them now and in the future Recommendations Putting Personalisation at the Heart of Planning 14

"The provision of unpaid care and support to family members and friends is a major contributing activity to the health and wellbeing of our society" Carers The number of carers to adults with a learning disability whose own care and support needs were assessed by a social worker in Warwickshire in 2013/14 was 415; a decrease of 5% from 2012/13. No carers under the age of 18 were recorded as being assessed for their own needs on CareFirst in 2013/14. Carer assessments must be carried out for all carers in accordance with the Children and Families Act 2014 and the Care Act

Looking Ahead The number of people with a learning disability is likely to increase by 1% per annum over the next 15 years due to increased life expectancy and increasing numbers of children with complex needs surviving into adulthood. According to Emerson & Hatton (2011) the number of adults with learning disabilities who are eligible for social care services will increase by 1.7% every year to Increased choice and control for individuals with a learning disability and their families across health and social care adds to the complexity of service development. On top of this, there will be policy changes in terms of a new model of care for people with learning disabilities. This will impact on the range and choice of services available and hopefully will improve outcomes for individuals. 16

Many of the recommendations from this needs assessment have already been incorporated into local plans. However, these plans must not just stay on paper and need to be actioned. As part of Warwickshire's JSNA review process, recommendations from this needs assessment will be monitored in terms of their implementation AND their outcome. This will be measured one year after sign-off. Next steps 17

Questions / Comments? For further information please contact: Warwickshire’s JSNA Team Needs assessments are published on Warwickshire’s JSNA website: