Learning disability and autism
What are our overall aims by 2028?
To achieve the Partnership Statement from the Building the Right Support Action Plan (August 2022) meaning that in Coventry and Warwickshire:
- Adults, children, and young people with a learning disability and autistic adults, children, and young people will be equal citizens in their communities;
- People with a learning disability and autistic people will live in their own homes and have the right health and social care support in place to meet their needs and live an ordinary life. This includes access to education, employment, and other opportunities which help people to fulfil their aspirations.
To deliver the Coventry and Warwickshire Joint Strategy for Autistic People 2021-2026, which commits the partner organisations to commissioning high quality autism services and support, as well as working closely with one another to build local communities that are more inclusive and welcoming for autistic people, and to improve the lives of and opportunities for autistic children, young people, and adults.
What’s our starting point?
We have established a core system programme structure with separate groups focused on oversight and setting the strategic direction (Working Together in Partnership for Learning Disabilities Board and the Autism Partnership Board); operational delivery (the Learning Disability and Autism Operational Steering Group); reducing health inequalities (the Learning Disability and Autism Health Inequalities Steering Group); and joint system ownership for the learning disabilities and autism programme of work (Learning Disabilities and Autism Collaborative). Through these groups established programme reporting, governance and escalation processes are in place.
There is an identified ICB Executive Lead for Down syndrome, Learning Disabilities and Autism (LDA), joint input and ownership across health and social care partners to the LDA Programme, and Experts by Experience in Co-Chair roles across the above governance structure. We are developing our Annual Delivery Plan to respond to relevant objectives in the NHS Operational Planning Guidance for 2023/24, recognising that focusing on these objectives will enable the delivery of our longer term aims outlined above.
What are some of the key links to other parts of the plan?
Improving Access to Services - Primary Care – the programme of work links with general practice across a range of different areas, including Learning Disability Annual Health Checks.
Health Inequalities – the Learning Disabilities and Autism Health Inequalities Steering Group brings partners together to co-ordinate action to drive improvement and reduce health inequalities, including by using local intelligence to identify priority areas for action.
Children and Young People – links to system planning in relation to services for children and young people, and eating disorder services.
Quality – ensuring that people with a learning disability and autistic people of all ages experience high quality support and care is a key area of focus across the LDA Programme.
Personalised Care – personalised care and support and inclusive decision making are guiding principles of the Building the Right Support Action Plan and, in turn, our local work.
What will we be focusing on in the next 2 years?
Sustainability Plan for LDA Programme – continuing to implement agreed actions, including the transition of the ICB Clinical Commissioning and Case Management Team to Coventry and Warwickshire Partnership NHS Trust (CWPT) in 2023/24. Working to agree how the totality of the available financial envelope is spent as a system, and how we can invest sustainably in community services.
Reducing Reliance on Inpatient Care – focusing on having a consistent discharge assurance process with 12 point discharge plan embedded, having an agreed system approach to relevant caselaw, and completing the development and implementation of a digital Dynamic Support Register (DSR) and Inpatient Web Service to better support individuals living in the community.
Continuing to embed the Building the Right Support Action Plan, including by implementing an All-Age Learning Disability and Autism Intensive Support Team, evaluating community forensic services to determine future funding and focus, and working to implement the national Dynamic support register and Care (Education) and Treatment Review Policy, including CETR Oversight Panels.
Admission Avoidance – continuing our community based Admission Avoidance Service, scoping the development of a community bed-based offer for 16+ autistic people, and continuing to deliver the all-age enhanced offer for people with a learning disability through CWPT.
Continuing to embed co-production across the LDA Programme, including engaging with local Parent Carer Forums and developing our Expert by Experience (EbE) involvement offer.
Working at a system level to develop Integrated Workforce Plans for the learning disability and autism workforce, and to implement the Oliver McGowan Mandatory Training on Learning Disability and Autism.
Housing and market development, and delivering improvements through our Strategic Housing Action Plan and Market Development Plan.
Developing strategies to reduce restrictive practices, working in line with host commissioner arrangements and ensuring people have high quality care, close to home. Regular commissioner oversight visits and Care (Education) and Treatment Reviews of inpatients and people at risk of admission to hospital. Strengthening our approaches to quality assuring services for people with a learning disability and autistic people with complex needs in and out of area, by developing a joint approach to quality assurance for health and social care services.
Working with system partners including primary care, Local Authorities, and provider collaboratives to improve healthcare access and reasonable adjustments to services, address inequalities in health and healthcare outcomes for people with a learning disability and autistic people in line with priorities in the NHS Long Term Plan and national LeDeR policy. Viewing existing pieces of work through the lens of health inequalities, developing an understanding of the layered impacts of health and healthcare inequalities for this group and inequalities experienced across all settings.
Focused work relating to children and young people (CYP), including children and young people with SEND in relation to the high numbers of autistic young people and young people with a learning disability presenting with disordered eating/eating disorders. Continuing our Keyworker Service, and delivering earlier intervention and preventing escalation of needs through our Early Support Pilot.
Through our Autism Partnership Board continuing to focus on delivering the shared vision in the Joint Strategy for Autistic People 2021-2026, with Programme Management resource leading the co-ordination of strategic delivery, assurance, monitoring, and reporting on the five priority areas in progress.
Continuing to focus on reducing waiting times for diagnostic assessment through commissioning additional diagnostic capacity, and review and evaluation of projects that seek to improve the diagnostic process including the Differentiated Diagnosis Project.
Through the Working Together in Partnership for Learning Disabilities Board focus on strategic developments around eight prioritised areas: Staying healthy; Having a good life; Having friends and relationships; Getting a job and keeping it; Having a good home and being independent; Keeping safe and out of trouble; Preparing for adulthood; and Education and training.
Reviewing the national guidance relating to the Down Syndrome Act 2022 (when published) and working in collaboration with Experts by Experience and members of the Working Together in Partnership for Learning Disabilities Board to implement the guidance.
Agreeing an ICB Executive Lead for Down syndrome to:
- Be a champion for children, young people and adults who have Down syndrome in the local area;
- Work closely with people who have Down syndrome and their families to learn from their experiences of care; including, what works well, and issues and challenges in accessing the support they need;
- Support the ICB to develop and implement approaches to involving people with Down syndrome;
- Ensure feedback, concerns and complaints from people with Down syndrome, their families, and relevant community groups and organisations are acted upon.
Key Challenges
Reducing reliance on inpatient care/CYP: increase in CYP presenting with disordered eating/eating disorders – specifically our system currently has high numbers of autistic young people and young people with a learning disability in inpatient care presenting with these disorders.
Reducing reliance on inpatient care: agreeing a system approach to relevant caselaw for people who cannot be discharged from hospital to the community under the current Mental Health Act to ensure that people are supported in the least restrictive environment.
Workforce: significant undertaking to implement the Oliver McGowan Mandatory Training on Learning Disability and Autism.
Autism: limited existing diagnostic capacity within the system, resulting in the need to procure external capacity.
Reducing reliance on inpatient care/CYP: increase in CYP presenting with disordered eating/eating disorders – specifically our system currently has high numbers of autistic young people and young people with a learning disability in inpatient care presenting with these disorders.
Reducing reliance on inpatient care: agreeing a system approach to relevant caselaw for people who cannot be discharged from hospital to the community under the current Mental Health Act to ensure that people are supported in the least restrictive environment.
Finance: significant costs associated with community support packages for complex discharges from hospital for people with challenging behaviours. Also recognised challenges relating to ‘double funding’ (for both inpatient and community services) for people who cannot be discharged from hospital to the community under the current Mental Health Act.
Finance: national funding streams available to the LDA Programme are changing from April 2023, with more areas covered by Service Development Funding. A prioritisation exercise was undertaken in 2022/23 to decide what programme and system funds would focus on for 2023/24, and work is underway to agree how the totality of the available financial envelope is spent as a system, and how we can invest that sustainably in community services.
Housing and Market Development: challenges in relation to care providers being unable to provide support to people with a learning disability and autistic people in the community who are at risk of admission to hospital, or who are due for discharge from hospital. Market challenges around workforce, recruitment and retention.
Challenge around lack of specialist provision in the care market to support individuals with forensic and other specialist support needs.
DSR/C(E)TR Policy: key challenge on implementing policy in relation to self-referral on to the Dynamic Support Register, which is being worked through locally and is also an issue for other systems nationally.
Key Metrics and Deliverables
Reduce reliance on inpatient care while improving the quality of inpatient care, so that;
- No more than 30 adults with a learning disability and/or who are autistic per million adults; and
- No more than 12–15 under 18s with a learning disability and/or who are autistic per million under 18s, are cared for in an inpatient unit by March 2024.
Our submitted targets are above the NHS Long Term Plan targets (all targets per million):
- Adult inpatients: March 24: 28 March 25: 24 March 26: 21
- Under 18s inpatients: March 24: 5 March 25: 4 March 26: 3
Additional key metrics relating to reducing reliance on inpatient care:
- Commissioner oversight visits of inpatients every 6 weeks (CYP) and 8 weeks (adults);
Repeat inpatient C(E)TRs every 3 months (CYP), 6 months (adult – ICB Commissioned), 12 months (Adult Provider - Collaborative, Adult NHS England Specialised Commissioning, or Adult Eating Disorder Provider Collaborative commissioned);
- Reduction in length of stay for inpatients.
Implementation of the DSR/C(E)TR Policy by 1 May 2023.
Learning Disability Annual Health Checks – 75% of people aged over 14 on GP learning disability registers receive an annual health check and health action plan by March 2024.
Learning from lives and deaths – people with a learning disability and autistic people (LeDeR) – 100% of reviews (both initial and focused) are completed within six months of notification.
Sustainability Plan – ICB Clinical Commissioning and Case Management Team transfer to CWPT completed by end of May 2023.
Autism – deliver agreed trajectories relating to reducing the waiting time for diagnostic assessment, and other deliverables, milestones and trajectories set out in the Autism Programme Delivery Plan.
Workforce – develop Integrated Workforce Plans for the learning disability and autism workforce to support delivery of all other objectives.