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Learning Disabilities and/or Autism

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The NHS has a crucial role to play in helping people with a learning disability, autism or both lead longer, happier and healthier lives.

The NHS Long Term Plan aims to improve people’s health by making sure they receive timely and appropriate health checks, while improving the level of awareness and understanding across the NHS of how best to support them as patients.

More people with complex needs will be supported to live fulfilling lives at home rather than in hospital, while thousands will be offered a personal health budget, giving them choice over the type of support they need to live the life they choose.

In Staffordshire and Stoke-on-Trent we are working with local authorities and providers to determine how we deliver this in the area.

One of our areas of work we are proud of and has transformed the lives of individuals with learning disabilities and/or autism can be viewed here.


Children and Young Persons (CYP) Key Worker Early Adopter Site

The Key Worker Service has been developed as a response to the NHS England & NHS Improvement Long Term Plan (LTP) commitment that by 2023/24, eligible children and young people with a learning disability, autism - or both - with the most complex needs, either currently an inpatient or at risk of admission will have a designated Key Worker.

The Key Worker pilot in Staffordshire and Stoke-on-Trent is being hosted by the local NHS Trusts (North Staffs Combined Healthcare Trust and Midlands Partnership Foundation Trust) on behalf of a system wide partnership across Health, Local Authority and Voluntary/Independent Sector.  The project aims to provide dedicated key workers for children and young people with a diagnosis of learning disabilities and/or autism, aged 0 – 25, who are on the Dynamic Support Register (DSR) as at high risk of hospital admission or currently accessing in patient services.

The team will provide support to children, young adults and families, helping them to access the right help at the right time across complex systems.

Each key worker will have an active caseload and will work with the CYP and their families to co-produce a person-centred, need-based and age appropriate support plan that will ensure continuity of the services and support once key working involvement ceases.

The pilot will work on the principle of testing, learning and adapting the service, as needed, highlighting any gaps and/or service deficiencies that arise. 

When does the project start?

The service is undergoing a phased implementation which will commence mid October 2021, with a view to being fully operational from 1st November 2021, with regular reviews through the lifecycle of the project.

Who is eligible for support?

Children and young people with learning disabilities and/or autism, aged 0 to 25, already in hospital or in crisis and at risk of admission. The CYP will need to be on the Dynamic Support Register (DSR) with a Red or Amber rating for risk of admission or an existing inpatient. Referrals for keyworkers will only be made via the DSR.

Who can make referrals for a keyworker?

Referrals for keyworkers will only be made via the Dynamic Support Registers for children and young people who are eligible for support as indicated above.

What will a key worker do?

The keyworker will:

  • Work as part of a multi-agency approach to offer specific support and coordination to enhance  existing Multi-Disciplinary Teams

  • Support carers/family to understand the child/young person’s needs and facilitate access to relevant services

  • Work with the CYP and carers/family, taking a person centred, individualised approach, ensuring the CYP and parents/carers are at the centre of planning and discussions

  • Assist practitioners to support the CYP and family to develop skills and strategies to increase independence and less reliance on other services long term

  • Work to reduce health inequalities and support others to make the required reasonable adjustments needed for the CYP

  • Bring together necessary services to maintain effective care within the community and actively  avoid  risk escalations and hospital admission utilising Care and Education Treatment Review (CTR) recommendations

  • Offer education, advice, training and consultation to the wider health, education and social care economy around key working

  • Have a clear understanding around local provision and services accessible to the CYP who need it and when they need it, maintaining an up to date list of resources and contacts within localities.


What a key worker will not do as part of their roles

  • Act as a care coordinator for a CYP or hold responsibility for processes such as Care Programme Approach (CPA).

  • Act as a Personal Assistant for CYP.

  • Meet any social or recreational needs but will hold a directory of services and signpost as appropriate.

  • Routinely provide out of hours contact (these are by arrangement).

  • Undertake any lengthy treatments or interventions but refer/signpost onto other existing services. 

  • Remain as part of the core team once identified goals and outcomes have been achieved

  • Provide a follow up service but should a CYP need escalation, re-referral will occur through the DSR process if a keyworker is required. 

In summary benefits

Key workers will support children and young people and their family’s to navigate through services to provide timely support; preventing and minimising escalation in need and ultimately reduce the need for hospital admissions.

As the project develops more information and positive outcomes will be shared.