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People with learning disabilities

also known as: Adults with learning disabilities, Learning disabilities, People with a learning disability, People with a learning disability, People with learning disabilities.

People with learning disabilities find it much harder than other people to access assessment and treatment for general health problems that have nothing directly to do with their disability

People with learning disabilities

This page is part of the Joint Strategic Needs Assessment (JSNA)

Context:

Learning Disability is a generic term that describes a range of abilities and support needs. The needs of people with a learning disability vary according to the severity of a person’s disability and often their social environment and circumstances.

People with a learning disability often face prejudice and obstacles that make it difficult to access assessment and treatment for general health problems and maintain control over their own lives. However, the situation is improving with increased understanding of people’s needs, equality legislation and changes to the way services are delivered e.g. personalised support.

Click here to find out what we are doing to promote equality in Northumberland and how we are meeting our new duties under the Equality Act 2010.

Key Messages:

The proportion of the population who have a learning disability falls with age, in part because some common conditions associated with learning disability also lead to a reduced life expectancy compared to the general population. People with learning disabilities are 58 times more likely to die before the age of 50 than the general population.

However, the health of people with a learning disability has been improving over the years in conjunction with improvements in health and social care, so that many people with a learning disability are living longer. This does, however, pose some health concerns for people with learning disabilities in older age. In particular, there is a higher risk of complex health problems and dementia in people with Down’s Syndrome or profound and multiple learning disabilities.

National prevalence data suggest there will be 1500-1600 people with a moderate or severe learning disability in Northumberland.

Key issues for people with learning disabilities in the next five years:

  • An increase in the number of older people with learning disabilities who have additional needs
  • Increased life expectancy of people with Down’s syndrome
  • An increasing number of younger adults who have additional needs
  • Increasing rates of physical disability associated with cerebral palsy
  • The need to personalise care of people with complex and challenging behaviour
  • Applying best practice in the care of people with mental health problems to people with learning disability with mental health needs
  • A larger number of young people in transition from children’s to adult services

What we know - Statistical information

National

Statistical information on learning disability nationally is available from the Foundation for People with Learning Disabilities and from "Improving Health and Lives: Learning Disability Observatory",

Research indicates that there are just over 16,000 adults with profound intellectual and multiple disabilities in England. They may have severely limited understanding, great difficulty communicating, health problems and other disabilities such as impairments of vision, hearing and movement.

For others with mild or moderate learning disabilities, lower levels of support may be needed in managing social, emotional or practical issues. The majority of people with a borderline or mild learning disability will not be known to any specialist services.

15-30% of people with a learning disability have epilepsy, and physical disabilities such as cerebral palsy are common complications. There is also a significant overlap with autistic spectrum conditions (ASC). A quarter to a third of people with a learning disability may have an ASC. Link to Autism JSNA.

At least 55% of people with Down’s syndrome aged 0-69 years are affected by dementia compared to 5% of the general population aged over 65 years. Most of the current group of people with Down’s syndrome remain at home with family carers, or in minimally supported living environments without the resources to cope with increased dependency.

There are now more adults with a learning disability aged over 45 than under 18 years of age and more living in the community, rather than in institutional care and hospital.

Older adults with learning disabilities are more likely than younger adults to rely on public funding for support and accommodation. However, it is also true that people from younger age groups frequently have needs related to physical disability, complex and challenging behaviour and mental illness, including those who are in contact with forensic services.

Around 15% of people with a learning disability will have some form of behaviour such as aggression, destruction and self injury which presents a significant challenge for those caring for them. Around 15 per 100,000 of the general population will have severe challenging behaviour. For Northumberland this would give an estimate of around 37 people with severe challenging behaviour.

Up to half of all adults with learning disabilities may have mental health needs. Mental disorders are also more prevalent in people with a learning disability. In particular rates of schizophrenia are three times higher than in the general population. 25% of people with a learning disability who live in the community and 40% of those in hospital are likely to have mental health problems. Link to Mental Health JSNA.

Regional

Data collected from GP systems as part of the Quality and Outcomes Framework indicate that almost 10,300 people aged 18 and over across the North East have been diagnosed with learning disability.

Local

Northumberland has significantly more people with learning disabilities than the national and regional averages (NEPHO 2012).

Data collected from GP systems as part of the Quality and Outcomes Framework indicate that almost 1,500 people aged 18 and over across Northumberland have been diagnosed with learning disability.

34% of people with a learning disability known to services are over 50 years of age, 12% over 65 years.

There are 100 people with Down’s Syndrome known to services.

At the end of March 2012, 1328 adults with learning disabilities were supported by care managers in Northumberland (SWIFT).

856 people were receiving services commissioned from the social care budget at the end of March 2012. Of these people:

  • 113 were arranging some or all of their support themselves using a direct payment.
  • 218 were supported by home carers, many of them receiving very substantial support – on average 48 hours of home care per week.
  • 184 were attending day care services, on average for three and a half days per week.
  • 241 were living in care homes
  • An estimated 505 people took delivery of items of disability equipment supplied by the joint equipment store.
  • 131 people received housing-related support was provided to 131 people
  • 38 people received funding for a short-break
  • 62 other people received funding for other services.

There are 32 shared lives (adult placement) carers offering long term family based support to 43 people with a learning disability (3% of people known to services).

There are currently 951 people of working age recorded as living in settled accommodation (e.g. holding their own tenancies). This equates to 76% of working age people known to services and compares to 22% of people living in residential care.

Community Resource Centres have been developed to focus on the needs of those people who have complex needs or challenging behaviour. Alternative opportunities include outreach projects, supported employment and further education and leisure activities.

Policy and Research

Winterbourne View Hospital Final Report (DH, Dec 2012)

The Government published a final report following investigations into the institutional abuse at an independent hospital for people with learning disabilities, autism, mental health conditions and challenging behaviour. The report includes a programme of action to transform services so that vulnerable people no longer live inappropriately in hospitals and are cared for in their community near to family and friends in line with best practice.

People with learning disabilities in England 2011 (Improving Health and Lives, Learning Disabilities Observatory 2012)
This report provides a summary of information on characteristics of people with learning disabilities, the services and supports they use and their carers. The report includes data on health, education, adult social care, employment, benefits and carers. It also highlights progress being made on the implementation of key health and social care policies for people with learning disabilities.

Making written information easier to understand for people with learning disabilities (DH, et al 2010)

Good practice guidance primarily for public sector organisations at a local and national level, but also for other organisations who produce public information specifically for people with learning disabilities, or anyone involved in commissioning Easy Read materials.

Valuing people now delivery plan 2010-11 (DH, 2010) was published together with a range of materials to support the implementation of Valuing People Now, the cross government strategy for people with learning disabilities, taking forward the six priorities from the original strategy Valuing People, Healthcare for all and A Life like any other to improve services for people with learning disabilities across health, housing, employment and community care services.

Personalisation through Person - Centred Planning (DH,2010)
This guidance published by the Putting People First and Valuing People Now teams was developed to help local areas understand how person-centred planning can help to deliver Putting People First.

Inclusion health: improving primary care for socially excluded people (DH, 2010)
This guidance document provides practical support for commissioning to improve access to and quality of primary care services for socially excluded people, including people with learning disabilities.

Raising our sights: services for adults with profound intellectual and multiple disabilities (DH, 2010)

A report by Professor Jim Mansell, commissioned as part of the Valuing People Now delivery plan, highlights the most important parts of planning and delivering support for people with the most complex needs.

Delivering same-sex accommodation in mental health and learning disability services (NHS Confederation, 2010)

This briefing summarises existing national policy and good practice on same-sex accommodation, explains what support is available to organisations that need to make improvements.

Healthcare for people with learning disabilities: recommendations of the Parliamentary and Health Service Ombudsman (DH, 2010)
Sets out action needed to respond to the recommendations in the 'Six Lives' Report, which highlighted failings in health and social care services that led to premature and avoidable deaths of people with learning disabilities. View the report Six lives: the provision of public services to people with learning disabilities.

Valuing Employment Now (DH, 2009) set out plans to radically increase the number of people with learning disabilities in employment by 2025.


Health action planning and health facilitation for people with learning disabilities: good practice guidance
(DH, 2009) provides practical support in putting people with learning disabilities at the centre of all action relating to their health.

Care Quality Commission Strategic Plan 2010-2015- position statement and action plan for learning disability (CQC 2009) a plan outlining how the CQC will drive up standards on behalf of people with learning disability.

Other relevant Health and Social Care policy and legislation:

Health and Social Care Act 2012

No Health Without Mental Health: a cross government mental health outcomes strategy for people of all ages (HM Government 2011).

Outcomes Frameworks for the NHS, Public Health and Adult Social Care.

Equality Act 2010

A vision for Adult Social Care: Capable communities and Active Citizens (DH, 2010)

Commissioning for personalisation: a framework for local authority commissioners (DH, 2010)

Recognised, valued and supported: next steps for the carers’ strategy (HM Government, 2010)

Health and Social Care Act 2008

Mental Health Act 2007 amends the Mental Health Act 1983

Mental Capacity Act 2005 includes Deprivation of Liberty Safeguards.

What people have told us – consultation and feedback

People receiving social care services

People receiving social care services in Northumberland were surveyed as part of the Adult Social Care User Survey in England 2010-11. Overall views were very positive: overall satisfaction with the care and support people were receiving was 93% - either extremely (31%) satisfied, very satisfied (32%) or quite (30%) satisfied.

This is reflected in the view that some key aspects of quality of life were mostly in place:

  • People described their personal care positively: 53% feeling able to present themselves in the way that they liked; 41% feeling adequately clean and presentable.
  • 64% of people felt they got all the food and drink they liked when they wanted it; 30% felt their food and drink adequate.
  • 60% felt their home was as clean and comfortable as they wanted; 35% felt it was adequate.
  • 62% of people felt as safe as they wanted; 30% felt adequately safe.

However, views on overall quality of life suggested that people would like to see improvement: 47% of people felt extremely, very or quite satisfied. Possible issues include:

  • 72% of people felt they had as much control as they wanted over daily life and 47% felt they had adequate control.
  • 39% felt they had as much social contact as they would like, and 36% had adequate social contact.
  • 61% of people thought information and advice very easy or fairly easy to find, 20% found it fairly difficult or very difficult to find.
  • Perhaps understandably in a county such as Northumberland, satisfaction with getting around outside the home was an issue: with 30% of people feeling able to get to all the places in their area that they want; 27% acknowledging that at times this was a challenge; 24% unable to get to the places they want and 19% unable to leave their home.

In-house services (mostly for people with learning disability)

The users of these services made the following points.

People liked going to the day services, felt safe there; were happy with the staff; had friends there; but views about meals and information provided by the service were mixed.

People using the horticultural services also liked going there; felt safe there; were happy with the staff; and had friends there. They reported that they got the chance to learn about new things; they knew how to use tools and equipment safely; but some people felt they were not consulted about how the service was run and others also wanted to see better information.

People from residential care services liked living there; were happy with the building; felt safe there; were happy with the staff; and felt able to keep in touch with family and friends. Some people said they wanted more things to do and to go out more: some people did not feel able easily to make their own drinks and snacks.

Copies of surveys from previous years are available below:

What customers have said about our services (Northumberland Care Trust 2009)

Annual Survey of People Accessing Care Management (Northumberland Care Trust 2008)

Home Care Survey Summary 2009 (Northumberland Care Trust 2009)

Summary report on outcomes for service users and carers 2008 (Northumberland Care Trust 2008)

Our plans for the future:

Regional:

NHS North of Tyne Integrated Strategic & Operational Plan 2012-13 to 2014-15 (ISOP) combines the commissioning plans of the four CCGs in North of Tyne including Northumberland, which will be taking over the commissioning responsibility from NHS North of Tyne by April 2013. Within the overall objectives of prevention and wellbeing; care closer to home; service integration; self care and care planning, the commissioning plans share a number of key strategic themes including 'transforming mental health and learning disabilities pathways'.

Local:

The Joint Social Care and Health Commissioning Plan 2012-2015: Learning Disability Services (Northumberland Care Trust, Northumberland County Council and Northumberland Commissioning Group, 2012) sets out shared commissioning intentions for adults with learning disabilities, including:

  • Promoting independence, wellbeing and the use of ordinary every day services
  • Matching services with the personal needs and preferences of people with learning disabilities
  • Improving service quality

The 2012/13 planned actions for the Northumberland CCG within the National Commissioning for Quality Learning Disability Health Self Assessment Framework (LDHSAF) are set out here (link to the summary of the excel spreadsheet) and include a summary of the background evidence on which this assessment is based. An easy read summary of the priorities arising from this assessment is given here.

The Children’s and Young People Plan 2011-2014 states that safeguarding the most vulnerable children and young people and high standards of practice remain key areas for action. Identifying those families whose children with learning disabilities will need support into young adulthood is vital so that help is a constant in their lives.

The Northumberland Housing Strategy 2011/12 is over-arching and includes housing and support for vulnerable groups, such as those with learning disabilities.

Resilient for the Future: Sustainable Community Strategy for Northumberland (NSP May 2011). The objectives and issues include giving everyone a voice and influence, providing healthy lifestyle choice, supporting our young people into adulthood, delivering services differently.

A preventative approach to Adult Social Care in Northumberland (Northumberland NHS Care Trust and Northumberland County Council, 2009)

Describes how good information and advice, practical support, appropriate housing options, reablement and joint working between health and social care will assist people in living fulfilled and independent lives and reduce the number of people requiring ongoing support from social care.

Contact Adult Social Care

Telephone: 01670 536 400

Email address: Socialcare@northumbria.nhs.uk