People with disabilities
also known as: Adults with learning disabilities, Learning disabilities, People with a learning disability, People with a learning disability, People with learning disabilities.
A disability may be physical, cognitive, mental, sensory, emotional, and developmental, or any combination of these. Disability is an umbrella term, covering impairments, activity limitations, and participation restrictions.
The aim of a JSNA is to improve the health and wellbeing of the
local community and reduce inequalities for all ages.
Some geographical areas and disadvantaged groups experience much
poorer health and greatly reduced life expectancy, and to reduce
these health inequalities requires tackling the wider determinants
of health. This enables people in vulnerable groups to have greater
control and increased ability to make decisions about improving
Adults with austistic spectrum conditions
Autism is a lifelong developmental disorder
which affects the way people interact with the world around
- 400,000 people are estimated to have autistic
spectrum conditions in the UK. Of these 160,000 are estimated to
have Asperger Syndrome. 70,000 are estimated to have a severe
- Adults with a more severe learning disability
have a greater likelihood of having autism according to
a report published
in 2012 by the NHS Information Centre. The report combines data
from the Adult Psychiatric Morbidity Survey (APMS) 2007 with
findings from a more recent study based on a sample of people with
learning disabilities living in private households and communal
The report estimates that the
prevalence of autism:
- Is 1 per cent in the general population
- Is approximately 35 per cent among adults
with severe learning disabilities living in private households
- Is approximately 31 per cent among adults
with mild or severe learning disabilities living in communal care
- Increases with greater severity of learning
disability or lower verbal IQ
Whilst the study comprised a relatively small
sample with limited geographical coverage (Leicestershire, Lambeth
and Sheffield) and did not include the institutional population, it
did include two distinct populations (people in communal care
establishments and people with learning disabilities), which were
not covered by the APMS 2007.
- Information on the number and nature of
autistic spectrum conditions is highlighted by specialist
organisations as a serious issue in its own right.
- A long-standing problem has been people with
autism being refused support because they do not fit easily into
mental health or learning disability services.
- To improve access to and responsiveness of
services, there needs to be:
diagnostic services and clear pathways to care and support
o better access
to mental health services where required, and the provision of
adjustments to meet individual needs
awareness of autism among healthcare and social care
According to the NAS 'I Exist report' (2008),
only 15% of adults with autism are in full-time paid employment and
49% of adults with autism still live at home with their parents. Of
those adults who live on their own, 44% say that their families
provide most of their support.
Northumberland (2012 data)
Based on national prevalence rates, it would
be expected that approximately 3,120 Northumberland residents would
have an ASD, 2,770 of whom would be aged 18 and over.
From local authority data, approximately 400
adults (over 18 years) are known to services (250 in Community
Learning Disability teams and 150 known to Mental Health teams).
This suggests that there are many more people living in the
community with ASD who are not receiving formal help.
The number of adults in Northumberland who
have a learning disability and ASD known to social care is 250. 149
of these people have a formal diagnosis of ASD, 105 of whom receive
services in addition to a care manager. Out of the 101 people who
have suspected ASD but no formal diagnosis, only 19 have no other
social care services other than a care manager. The majority
require additional services.
The number of children and young people (aged
16-20 years) in Northumberland with ASD completing the transition
process to adult services is thought to be about 105. The number
going through transition is likely to increase in future years as
the effect of consistent diagnostic guidelines is felt.
Further statistical information
Statistical information on learning disability
nationally is available from the Foundation for
People with Learning Disabilities and
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.
- 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.
- 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
- 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. Further information can be
found in Adults with mental health
Adults with learning disabilities
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
Northumberland has significantly more people
with learning disabilities than the national and regional averages
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
- 856 people were receiving services
commissioned from the social care budget at the end of March 2012.
Of these people:
o 113 were
arranging some or all of their support themselves using a direct
o 218 were
supported by home carers, many of them receiving very substantial
support – on average 48 hours of home care per week.
o 184 were
attending day care services, on average for three and a half days
o 241 were
living in care homes
o An estimated
505 people took delivery of items of disability equipment supplied
by the joint equipment store.
o 131 people
received housing-related support was provided to 131 people
o 38 people
received funding for a short-break
o 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
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
learning disabilities and lifestyles
projections of learning disabilities
- The prevalence of sight loss increases with
age and the UK population is ageing. One in five people aged 75 and
over and one in two people aged 90 and over is living with sight
loss in the UK.
- The direct and indirect costs of sight loss
are estimated to have risen from £6.5 billion in 2008 to £7.9
billion in 2013. (RNIB 2009).
- Figures for Northumberland in April 2013
showed a total of over 1,474 people registered as severely sight
impaired, blind, sight impaired or partially sighted.
- There were 2,438 cataract operations for
Northumberland residents between Apr 2007 and March 2008 (the
latest available ONS data, 2009). This represents 12% of the
cataract operations that were carried out in the North East. Note
it is not uncommon for the same person to undergo two treatments in
the same year).
- Visual impairment increases significantly
with age. 44% of those registered with a sight impairment are
either severe sight impaired or blind.
- Over half (54%) of those registered with a
sight impairment (803 people) are aged over 80 years old.
- 126 adults aged 18-64 who do not fall in
other need groups are also registered with severe sight
impairments, and 115 with other sight impairments.
- Projections of physical disability (including
hearing and sight impairments
Additional data to follow
Adults with mental health difficulties
- At least one in four people will experience a
mental health problem at some point in their life and one in six
adults has a mental health problem at any one time
- Almost half of all adults will experience at
least one episode of depression during their lifetime
- One in ten new mothers experience post natal
- About one in 100 people has a severe mental
- The number of working age adults in
Northumberland with a diagnosable mental illness may be approaching
20,000 – though commonly less than one in four require treatment
from specialist mental health services, and less than one in four
of these have a psychotic illness
- 1,508 working age adults in Northumberland
were on the caseloads of community mental health teams at the end
of March 2012.
- Community mental health teams report that
8-15% of the people they work with have alcohol, drug or other
substance misuse problems in addition to their mental illness
- Community mental health services in
Northumberland generally find that rather under 1% of their
caseloads are from non-white ethnic groups – broadly in line with
the overall population. There is a little evidence that these
groups may be over-represented among those admitted for in-patient
care or compulsorily detained in hospital, though the numbers are
very small. There is national evidence that black and minority
ethnic groups have varying rates of psychosis and can be treated
differently from the white population by mental health
At the end of March 2012, 308 people with
mental health problems were receiving services commissioned from
the social care budget. Of these people:
- 90 people were attending day care and
outreach services providing a range of statutory and non-statutory
opportunities in different areas of the county with a focus on
vocational skills or employment opportunities.
- 19 were arranging some or all of their
support themselves using a direct payment
- 49 were supported by home carers, for an
average of 4.5 hours per week
- Housing-related support was being provided to
- An estimated 79 people took delivery of items
of disability equipment supplied by the joint equipment store.
- 90 were living in care homes, of whom 4 were
in care homes providing nursing care, and 2 were accommodated under
a contractual arrangement made by the Adult Care Directorate but
were paying their own fees. 14 of the 90 people were living in care
homes outside Northumberland.
- 18 people had short breaks in care homes
arranged by the Adult Care Directorate
common mental health problems
projections of mental health problems
Adults with caring responsibilities
National data from the 2011 Census
- The 2011 Census figures for the UK show an
11% rise in the number of carers since the last Census in 2001 -
increasing by over 620,000 to 6.5 million in just 10 years.
- Carers UK estimates that we will see a 40%
rise in the number of carers needed by 2037 – an extra 2.6 million
carers, meaning the carer population in the UK will reach 9
million. The care they provide is worth an estimated £119bn per
- Every year over 2.1 million adults become
carers and almost as many people find that their caring
responsibilities come to an end. 3 in 5 people will be carers at
some point in their lives. (Carers UK 20014).
- About 3.4 million (58%) of carers are women
and 42% are male
- One in five people aged 50-64 are carers
which equates to over 2 million people in this age bracket
- Almost 1.3 million people aged 65 or older
are carers and the number of carers over the age of 65 is
increasing more rapidly than the general carer population. Whilst
the total number of carers has risen by 11% since 2001, the number
of older carers rose by 35%
- Of the estimated 662,000 carers who combine
part-time work with caring, 89% are female and women are more
likely to give up work in order to care. (Equality and Human
Rights Commission 2010).
- A demographic group sometimes referred to as
the 'sandwich generation' typically care for older or disabled
parents as well as their own young children. The peak age for such
dual-caring is 40-44 for women, and 45-49 for men. Women are more
likely to be dual-carers than men. (Agree et al 2003).
- The 2011 Census showed that there were just
under 600,000 Black, Asian and Minority Ethnic (BAME) carers in
England. 2011 data indicates that a smaller proportion of the BAME
population provides care than the White British population. However
the BAME population is much younger and therefore less likely to
have older parents or other relatives needing care.
Across all carers:
- 93% said they provide practical help such as
preparing meals, doing laundry or shopping.
- 87% provide emotional support, motivation or
keeping an eye on someone either in person or by phone.
- 85% said they arranged or co-ordinated care
services or medical appointments.
- 83% said they manage paperwork or financial
matters for the person they care for.
- 71% of carers provide personal care like help
with washing, dressing, eating or using the toilet
- 57% carers were helping the person they care
for with their mobility – getting in and out of bed, moving around
or getting out of the house.
According to an NHS Information Centre
- Most carers (40%) care for their parents or
- Over a quarter (26%) care for their spouse or
- People caring for disabled children under 18
account for 8% of carers and 5% of carers are looking after adult
- A further 4% care for their grandparents and
7% care for another relative.
- Whilst the majority care for relatives, one
in ten carers (9%) care for a friend or
Most carers care for just one person
(83%), but 14% care for two people and 3% are caring for at least
- 58% of carers look after someone with a
- 20% look after someone with a sensory
- 13% care for someone with a mental health
- 10% care for someone with dementia.
Further information can be found in this
Policy Briefing from Carers UK: Facts about
Carers UK has produced extensive research on
issues affecting carers. Research reports can be accessed
Unpaid care in Northumberland - 2011 Census
Analysis from the latest (2011) census shows
that the number of people in Northumberland providing unpaid care
has increased in the last ten years from 33,609 to 35,697. The
percentage of the population who are unpaid carers has slightly
increased from 10.9% to 11.3%. The percentage of the population who
are providing over 20 hours unpaid care has increased slightly from
3.6% to 4.2%
The recorded number of people providing unpaid
care under 20 hours per week has fallen over the last ten years (a
decrease of 356 carers). The recorded number of people providing
over 20 hours care continues to rise (an increase of almost 2.5
thousand in the last ten years). Over 20 hours is the point at
which caring starts to significantly impact on the health and
wellbeing of the carer, and their ability to hold down paid
employment alongside their caring responsibilities.
- Over 13,000 people provide over 20 hrs of
care. This is an increase of 22% in ten years.
- Nearly 9,000 people provide over 50 hrs of
care. This is an increase of 17% in ten years.
Young Carers - 2011 Census
The 2001 Census found 175,000 young carers in
the UK. Some 13,000 are providing more than 50 hours of help a
week. Recent estimates are nearer to 700,000 young carers. The vast
majority (85%) of all children providing care are caring for one to
19 hours per week. This is a wide range which means caring will
affect these young people in different ways.
The 2001 Census identified 806 young carers in
Northumberland aged 5-18 who provided care, some up to 50 hours or
more per week.
The National Society for the Prevention of
Cruelty to Children, concludes that 4% of children will be young
carers at some point in their childhood. 57% of known young carers
are girls and 43% are boys.
This amounts to at least 2,000 children and
young people of school age in Northumberland, but this is still
considered a conservative estimate. This figure is more than
doubled taking into account the transition into adulthood and young
adults up to 25 who take on the caring role instead of higher
More detailed figures showing the profile of
carers in Northumberland by location and age will be available
Adult Social Care User Service Survey in England 2010-11
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
- 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
- 72% of people felt they had as much control
as they wanted over daily life and 47% felt they had adequate
- 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.
Previous surveys have revealed a high level of
satisfaction with the services received: the manner in which they
were treated and involved, the way that services were coordinated
and arranged around their needs, and the information received.
Carer involvement also featured strongly.
However, the overall approval rating, though
often in excess of 95%, was slightly lower for working age clients
for mental health in respect of safe levels of knowledge and
skills. Also, lower scores were received in relation to day service
provision, which has been under review in order to tackle the
following issues raised in the survey:
- no defined pathway through the services so
service users expect to stay within the services
- no clear pathway to employment opportunities
for most people with mental health problems
- transport influencing the availability of
Working age adults with physical
Projections of adults with a physical
Additional data to follow
Other groups that may be at risk
Copies of surveys from previous years are
Data and Statistics
Additional statistics are available in
section of Northumberland Knowledge