Suffolk & North East Essex Integrated Care System

Learning disabilities and Autism

WHY this is important for people in Suffolk and North East Essex

The best care and quality of life for people with learning disabilities and autism are essential if everyone in Suffolk and North East Essex is to start well and live well.

As an Integrated Care System we will ensure that:
  • Children and young people with autism, learning disability or both, are diagnosed early and have high quality care and support
  • People with autism, learning disability or both, receive personalised health and care support
  • People with autism, learning disability or both receive high quality impatient care
What’s the current picture?

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Learning Diff
What do we know about people’s local experiences?

A report by the Children and Young People’s Health Outcomes Forum highlighted the challenges for young people with long term conditions:

  • People tend to use multiple support services
  • People need information and advice
  • Importance of respite to carers
  • Choice of day centre activities is important
  • Thresholds to accessing services must be appropriate
  • The Vision Training Clinic provides positive educational benefits

For further information see www.healthwatchessex,,org.uk and www.healthwatchsuffolk.org.uk

The Foundation for People with Learning Disabilities highlights that:
  • The prevalence rate of autistic spectrum conditions is higher in men (2%) than women (0.3%).
  • The rate of autism is lowest among those with a degree (0.2%) and highest among those with no qualifications (2.1%).
  • The likelihood of a positive assessment for an autism spectrum condition varies with tenure and the level of deprivation in the local area.
  • 60-70% of people who have an autistic spectrum condition will also have a learning disability
  • There are an estimated 286,000 children in the UK with a learning disability.
  • Around 200,000 children in England have Special Educational Needs (SEN) associated with a learning disability. Of these, four out of five have a moderate learning difficulty, one in twenty have profound multiple learning difficulties.
  • Children from poorer families are more likely to have a learning disability.
  • Moderate and severe learning difficulties are more common among ‘Traveller’ and ‘Gypsy/Romany’ children. Profound multiple learning difficulties are more common among ‘Pakistani’ and ‘Bangladeshi’ children.
  • 89% of children with moderate learning difficulty, 24% of children with severe learning difficulty and 18% of children with profound multiple learning difficulty are educated in mainstream schools.
HOW we plan to make a difference 

    1.1 Children and young people with learning disability and/or autism are diagnosed early.

  • Autism diagnosis will be included alongside work with other children and young people’s mental health services to ensure we have timely diagnosis which is in line with best practice guidelines and will help reduce waiting times for specialist services.
  • Development of integrated neuro-developmental and behaviour disorder services will provide multiagency packages to support children and young people, their families and carers both before, during and after the diagnostic process. These packages will be developed jointly by the NHS, local authority children’s social care and education services, and expert charities with our service users, their families and carers.

    1.2 Children and young people with learning disability and/or autism have personalised support. We will enable this by:

  • Allocation of a designated keyworker for those with the most complex needs. Initially this will focus on inpatients or those at risk of being admitted to hospital, and will be extended to the most vulnerable children, by March 2024. Key worker support enables more effective care planning and coordination, and helps improve access to services. The children and young people that this service supports includes those who face multiple vulnerabilities e.g. Looked After and adopted children, and young people transitioning between services. In education and social care, improved personalised SEND care and support for, children and young people with learning disabilities and/or autism and their families. The NHS, education and local authorities collaborate to improve provision of services. Support includes preventative services, integrated care planning, and signposting families to support.
  • Bring hearing, sight and dental checks to children and young people with a learning disability and/or autism in special residential schools.

    1.3 Young people move from children to adult services seamlessly.

  • Young people will have effective transition services that provide continuity of care and support. Effective transitions help prepare young people for adulthood and greater independence at their pace, and avoid the ‘cliff-edge’ of moving to adult services. Health and social care partners will work to ensure young people and their families experience the same smooth transition if they are known to social care.
  • Planning for adulthood will beginning early with the young person and their family with their wishes and aspirations forming part of the Education Health & Care Plan.

    2.1 People with a learning disability and/or autism have good physical and mental health, and live well.

  • Children and young people with learning disabilities and/or autism and mental health needs can access to specialised CAMHS support when they need it.
  • We will improve uptake of the existing annual health check in primary care for people aged over 14 years with a learning disability so that at least 75% of those eligible have a health check each year. Health checks help to tackle the causes of morbidity and preventable deaths, and close the gap in life expectancy for people with a learning disability and/or autism. A specific health check for people with autism will also be introduced if trials are successful.
  • People will receive good information in an accessible format when contacting services to increase awareness of what is available in their local communities.

    2.2 People with a learning disability and/or autism receive high quality personalised care based on best practice.

  • Health and social care partners will support the diagnosis of learning disabilities and autism in adults, and provide integrated post diagnostic support for people who have a diagnosis of autism in adult life.
  • People will have equitable access to services to be able to live meaningful lives. Support will include integrated health and social care, appropriate housing, employment opportunities, meaningful relationships, effective crisis care, advance care planning and end-of-life. People will be supported to be active contributors to, and participants in their communities.
  • Opportunities to improve people’s health and wellbeing outcomes will be embedded in the commissioning and delivery of services.
  • Wherever possible, people with a learning disability and/or autism will be enabled to have a personal care budget or personal health budget. Personalised care with more choice and control enables better care outcomes and improved experience of care.
  • We will prompt the use of digital technologies to increase independence and enable people to be active citizens in their local communities.
  • We will expand the Stopping Over Medication of People with a learning disability and/or autism and Supporting Treatment and Appropriate Medication in Paediatrics (STOMP-STAMP) Programmes. Psychotropic medicine is more likely to be inappropriately prescribed to people with a learning disability and/or autism. These measures will help to stop the overmedication of people with a learning disability and/or autism. Pharmacists and GPs will be partners in integrated care in this area of care.
  • We will implement all NHS National Learning Disability Improvement Standards, by 2024. Whole system standards promote greater consistency, including rights, workforce, specialist care, forensic care, and partnerships with people and their families.
  • We will implement learning from Learning Disabilities Mortality Review Programme (LeDeR). This national programme aims to learn from mortality reviews to improve care of people with learning disabilities and/or autism.

    2.3 People with a learning disability and/or autism receive care and support from people who understand their individual needs.

  • Staff will receive information and training on supporting people with a learning disability and/ or autism. Staff will be better skilled at supporting people with a learning disability and/or autism. Awareness and training should involve everyone within health and care.
  • We will introduce a ‘digital flag’ in the patient record will ensure staff know a patient has a learning disability or autism. All relevant staff in contact with the person will be aware of their needs and can make adjustments such as longer appointments. Care records will be shared appropriately.
  • All local health and care providers will make reasonable adjustments for people with a learning disability and/or autism. People with a learning disability and/or autism should be able to access mainstream services, with reasonable adjustments, wherever possible. New primary care models will include the needs of people with learning disabilities and/or autism.

    2.4 Families of People with a learning disability and/or autism are supported.

  • Families play a critical role in caring for people with learning disabilities and/ or autism. Their views will be valued and encouraged in care and support planning.
  • Families have access to services in their own right including good information, carer assessments, care and support plans and respite care.
  • Supporting families with community-based services enables them to continue in their caring role, and to improve their quality of life. Particular focus is needed on the support of older carers.

    2.5 Adults and children with a learning disability and/or autism receive care and treatment in their community wherever possible. We will enable this by:

  • Increased community health and care services, that promote inclusion and equality, to live a full live with reasonable adjustments where needed.
  • Increased intensive, crisis and forensic community support through a seven-day specialist multidisciplinary service and crisis care. Increased service capacity will enable more people to receive personalised care in the community, closer to home, and reduce preventable admissions to inpatient services.
  • Increased Community Care, Education and Treatment reviews to ensure risks of hospital admissions are minimised.
  • Developing specialist community teams for children, young people and adults. Partners across the ICS will develop models, such as the Ealing Model, whose intensive support approach prevents children being admitted into institutional care.
  • Local providers controlling budgets to reduce avoidable admissions, enable shorter lengths of stay and end out of area placements, by March 2024. The local system will take greater control over how budgets are managed to help move more care to the community. By 2024 there will be no more than 30 adults per million and 12-15 children per million in inpatient facilities.

    3.1 Adults and children with a learning disability and/ or autism receive safe and high-quality inpatient care.

  • All inpatient NHS-commissioned care will meet the Learning Disability Improvement Standards by 2024. Care will be based on best practice and commitment to continual improvement. • We will implement recommendations on restricting seclusion, long-term segregation and restraint in inpatient settings. This work will be undertaken in collaboration with CQC to ensure care is safe and effective, particularly for children and young people.
  • We will achieve earlier transfers of care from inpatient settings through a ’12-point discharge plan’. This plan will ensure that planning is considered at the point of admission, help bring down the length of stays and ensure discharges are timely and effective.
  • We will complete all inpatient Care, Education and Treatment Reviews within the NHS standards.
  • We will implement and take learning from the outcomes of Care, Education and Treatment Reviews and Care and Treatment Reviews. This learning will inform our market development plans and lead to improvement in the resilience and expertise of our local community services.
  • We will reduce reliance on the need for inpatient care, both locally and out of area by increasing the range and number of community-based services offering an appropriate alternative to admission.

We will know we are making a difference because we will see:

  • More adults with a learning disability who live in stable and appropriate accommodation
  • More adults with a learning disability in paid employment
  • More people aged 14 and over on learning disability registers receiving annual health checks from 3,371 in 2018/19 to 4,294 in 2023/24
  • Reduction in the rate of people over 18 with a learning disability and/or autism in CCG-funded inpatient care, from 19.29% in 2018/19 to 15.43% in 2023/24
  • Reduction in the rate of people over 18 with a learning disability and/or autism in inpatient care currently funded by NHS England, from 19.29% in 2018/19 to 18% in 2023/24
  • Reduction in the rate of children and young people with a learning disability and/or autism in CCG- or NHS England-funded inpatient care, from 25.47% in 2018/19 to 7.68% in 2023/24
  • An increase in children with learning difficulties known to schools
  • An increase in children with autism known to schools
  • Fewer Individuals with learning disabilities involved in Section 42 safeguarding enquiries
  • More supported adults with a learning disability who receive direct payments, personal health budgets, self-directed support

Essex County Council took up NESTA’s 100 Day Challenge to help Essex communities to learn how to support people with learning disabilities and autism to live a meaningful life. Three teams across the county tested sixteen ideas ranging from new ways of supporting young people into employment, to bringing health services into the community and setting up an inclusive cricket team. The Challenge gave team members the space to collaborate and build on each other’s expertise - it involved more than 36 organisations and 23 people with learning disabilities and autism, working together to improve outcomes for more than 300 people.

‘Nick’s Rule; is an approach to decision making that makes sure everyone has an equal voice and the opportunity for their ideas to be heard. It is the brainchild of Nicholas Bunyon who, during the 100 Day Challenge, was taking part in a supported internship programme for young people with learning disabilities and autism at Essex County Council. Nick worked with people in the council and community groups to develop into a quality standard and assessment tool. This tool aims to ensure:

  • All ideas are heard
  • Everyone has a voice
  • Decisions can be made by people who aren’t in the most senior positions
  • People have the freedom to carry out their ideas
  • People have a budget to allow them to carry on with ideas and plans
“If I wasn’t part of the leadership team, I don’t think “Nick’s rule” would’ve come about, it was only because I was on the team that it did. Now, hopefully, “Nick’s rule” will help change the way Essex county council is structured and allow people to feel more at ease with things they may want to do.” Nick
    For further information see https://www.mentalhealth.org.uk/learning-disabilities
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