People with learning disabilities
This page is part of the Joint Strategic Needs Assessment (JSNA)
Index of information on this page:
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.
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
• 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 cerebral
• 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
What we know - Statistical
Statistical information on learning disability nationally
is available from the
Foundation for People with Learning Disabilities and from
Health and Lives: Learning Disability
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 behavior 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 behavior. For Northumberland this would give an
estimate of around 37 people with severe challenging behavior.
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.
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
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
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
- 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
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
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
This report provides a summary of infromation 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
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 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,
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 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
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
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
- 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
Telephone: 01670 536
Email address: Socialcare@northumbria.nhs.uk