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)
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.
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.
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
National prevalence data suggest there will be 1500-1600 people
with a moderate or severe learning disability in
Key issues for people with learning disabilities in the next
- 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
- Increasing rates of physical disability associated with
- The need to personalise care of people with complex and
- Applying best practice in the care of people with mental health
problems to people with learning disability with mental health
- A larger number of young people in transition from children’s
to adult services
What we know - Statistical information
Statistical information on learning disability nationally is
available from the
Foundation for People with Learning Disabilities and from
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
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
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
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
Northumberland has significantly more people with learning
disabilities than the national and regional averages (NEPHO
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
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
- 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
- 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
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
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
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
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
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
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
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
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,
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
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
provides practical support in putting people with learning
disabilities at the centre of all action relating to their
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
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
Outcomes Frameworks for the NHS, Public Health and Adult Social
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
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%)
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
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
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
Summary report on outcomes for service users and carers 2008
(Northumberland Care Trust 2008)
Our plans for the future:
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
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
- Matching services with the personal needs and preferences of
people with learning disabilities
- Improving service quality
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.
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
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
A preventative approach to Adult Social Care in Northumberland
(Northumberland NHS Care Trust and Northumberland County Council,
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