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Learning Disability - Predicting Need

We know that the number of people with a learning disability in Barnet is set to increase over
and above simple population increases and with that the number of people who will need health
and social care services. Demographic trends on their own do not account for the anticipated
significant increase in demand for Learning Disability Services.

Other factors include:
• A higher prevalence rate among some immigrant population groups, such as those
  originating in South Asia where rates of learning disability are significantly higher. Rates of
  learning disability amongst South Asians aged between 5 and 32 are up to three times
  higher than in other communities. Of the South Asian families caring for family members with
  a learning difficulty, 19% had more than one member with a learning difficulty.
• Increasing diagnosis of autistic spectrum disorders
• Increases in foetal alcohol syndrome linked to an increasing use of alcohol in the UK
• People with a learning disability are living longer - between 2001 and 2011, there will be an
  increase of between 10% (aged 50-59) 34% (aged 70-79).
• Increased survival rates among young people with severe and complex disabilities

Nationally, severe learning disability is relatively evenly spread in the population. However mild
to moderate learning disability is linked to poverty and rates are higher in deprived and urban
areas. A significant number of people with a mild or moderate learning disability live in the
community and do not come into contact with social services or specialist NHS learning
disability services. They are likely, at some point, to need preventative services including lower
levels of support to live independently. These people are likely to be greater users of general
public services including housing and health services and they tend to be in the lower
economic groups and more prevalent in the prison population.

People with a learning disability are known to be amongst the most vulnerable and socially
excluded in our society. They also have greater health needs than the rest of the population.
Although their life expectancy is increasing, it remains much lower than the rest of the
population. Life expectancy is shortest for people with learning disabilities who are least able.
People with learning disabilities are more likely to die some twenty years earlier; some of this is
a direct result of the inequalities they face within the health service. Not only are the health
needs of people with learning disabilities greater they also have a different pattern of health
need.

Chronic illness or disability such as epilepsy, diabetes, circulatory disease, sensory problems
and coronary heart disease and stroke as well as the other age related disabilities are 2.5%
more common than in the general population. Lack of early intervention/detection results in
deterioration of health problems and contributes towards shortened life expectancy. We know
that:

• Respiratory Disease is the leading cause of death in people with learning disabilities: 46% - 52%
• Coronary Heart Disease is the second most common cause of death (14-20%) and related to
  congenital heart disease.
• There is an increasing incidence of Gastro-oesophageal reflux disorder and Dysphagia and
  gastrointestinal cancer
• Epilepsy (30 – 50%) and Mental Health problems are more common in people with learning
  disabilities
• Sensory Impairments are more prevalent rates of 40% reported to have a hearing impairment
• People with learning disabilities are much more likely to be either under weight or obese in
  comparison with the general population
• In addition people with learning disabilities are known to lead sedentary lifestyles; in a recent
  study over 75% of the sample were leading lifestyles that were commonly seen in a person of the
  age of 70.
• People with learning disabilities are admitted to General Hospital services more frequently (26%)
  when compared to the general population (14%)
• Early onset dementia is expected in 45% of people with downs syndrome.

Responding to changing needs

Over the last six years since the publication of Valuing People, Valuing People - A New Strategy for
Learning Disability for the 21st Century, 2001 we have made significant improvements in our
services for people with a learning disability through ambitious modernisation programme for day
and residential care services, a move away from specialist health services to supporting people to
live well in the community and a greater involvement of people with a learning disability in day to day
decision making about their lives. The outcomes of this can be seen in people living longer, living
more independently and having increased choice and control. However needs continue to outstrip
resources despite as care costs have risen.

The biggest challenge that lies before us is how to provide for increasing demand whilst making
services person centred and keeping them within the resources available and on a path of steady
performance improvement. Merely expanding services to meet demand whilst making them more
person-centred is not an option. We must change the focus of our service provision from being one
which reacts to people’s needs as they arise to try to fulfil them, to one which plans ahead so people
know that they will get what they need when they need it in advance. This will be achieved through
personal budgets across the learning disability service and other public sector areas.

Key Messages for Learning Disability Services

• Health as well as social care services will need to ensure access to preventive health services is
  available so that chronic health problems, associated with learning disabilities, can be reduced
  and or treated effectively.

• The model for social care services is very traditional with an over-reliance on registered care
  fuelled through a high number of registered care places being available in Barnet. More self-
  contained accommodation is required particularly for young people coming through transition
  within Borough.

• There needs to be an expectation of that people with a learning disability will move into
  employment and schools; colleges and DWP working with the Council and employers to support
  people with a learning disability gain paid employment. Personal budgets will be key to this.

• Health and social services need to work together to develop appropriate joint packages of
  support for people especially for people with challenging behaviours and complex needs and as
  people age. High cost out of Borough residential placements are no longer the answer.

• Barnet has developed some excellent examples of health facilitation in both primary care and
  secondary settings. There is a need to roll this out across mental health and all GP practices to
  ensure that people with a learning disability have equitable access to healthcare services.
• The increased levels of demand in the absence of significant growth in budgets will require
  alternative patterns of service delivery to be established.

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Learning Disability - Predicting Need

  • 1. Learning Disability - Predicting Need We know that the number of people with a learning disability in Barnet is set to increase over and above simple population increases and with that the number of people who will need health and social care services. Demographic trends on their own do not account for the anticipated significant increase in demand for Learning Disability Services. Other factors include: • A higher prevalence rate among some immigrant population groups, such as those originating in South Asia where rates of learning disability are significantly higher. Rates of learning disability amongst South Asians aged between 5 and 32 are up to three times higher than in other communities. Of the South Asian families caring for family members with a learning difficulty, 19% had more than one member with a learning difficulty. • Increasing diagnosis of autistic spectrum disorders • Increases in foetal alcohol syndrome linked to an increasing use of alcohol in the UK • People with a learning disability are living longer - between 2001 and 2011, there will be an increase of between 10% (aged 50-59) 34% (aged 70-79). • Increased survival rates among young people with severe and complex disabilities Nationally, severe learning disability is relatively evenly spread in the population. However mild to moderate learning disability is linked to poverty and rates are higher in deprived and urban areas. A significant number of people with a mild or moderate learning disability live in the community and do not come into contact with social services or specialist NHS learning disability services. They are likely, at some point, to need preventative services including lower levels of support to live independently. These people are likely to be greater users of general public services including housing and health services and they tend to be in the lower economic groups and more prevalent in the prison population. People with a learning disability are known to be amongst the most vulnerable and socially excluded in our society. They also have greater health needs than the rest of the population. Although their life expectancy is increasing, it remains much lower than the rest of the population. Life expectancy is shortest for people with learning disabilities who are least able. People with learning disabilities are more likely to die some twenty years earlier; some of this is a direct result of the inequalities they face within the health service. Not only are the health needs of people with learning disabilities greater they also have a different pattern of health need. Chronic illness or disability such as epilepsy, diabetes, circulatory disease, sensory problems and coronary heart disease and stroke as well as the other age related disabilities are 2.5% more common than in the general population. Lack of early intervention/detection results in deterioration of health problems and contributes towards shortened life expectancy. We know that: • Respiratory Disease is the leading cause of death in people with learning disabilities: 46% - 52% • Coronary Heart Disease is the second most common cause of death (14-20%) and related to congenital heart disease. • There is an increasing incidence of Gastro-oesophageal reflux disorder and Dysphagia and gastrointestinal cancer • Epilepsy (30 – 50%) and Mental Health problems are more common in people with learning disabilities • Sensory Impairments are more prevalent rates of 40% reported to have a hearing impairment
  • 2. • People with learning disabilities are much more likely to be either under weight or obese in comparison with the general population • In addition people with learning disabilities are known to lead sedentary lifestyles; in a recent study over 75% of the sample were leading lifestyles that were commonly seen in a person of the age of 70. • People with learning disabilities are admitted to General Hospital services more frequently (26%) when compared to the general population (14%) • Early onset dementia is expected in 45% of people with downs syndrome. Responding to changing needs Over the last six years since the publication of Valuing People, Valuing People - A New Strategy for Learning Disability for the 21st Century, 2001 we have made significant improvements in our services for people with a learning disability through ambitious modernisation programme for day and residential care services, a move away from specialist health services to supporting people to live well in the community and a greater involvement of people with a learning disability in day to day decision making about their lives. The outcomes of this can be seen in people living longer, living more independently and having increased choice and control. However needs continue to outstrip resources despite as care costs have risen. The biggest challenge that lies before us is how to provide for increasing demand whilst making services person centred and keeping them within the resources available and on a path of steady performance improvement. Merely expanding services to meet demand whilst making them more person-centred is not an option. We must change the focus of our service provision from being one which reacts to people’s needs as they arise to try to fulfil them, to one which plans ahead so people know that they will get what they need when they need it in advance. This will be achieved through personal budgets across the learning disability service and other public sector areas. Key Messages for Learning Disability Services • Health as well as social care services will need to ensure access to preventive health services is available so that chronic health problems, associated with learning disabilities, can be reduced and or treated effectively. • The model for social care services is very traditional with an over-reliance on registered care fuelled through a high number of registered care places being available in Barnet. More self- contained accommodation is required particularly for young people coming through transition within Borough. • There needs to be an expectation of that people with a learning disability will move into employment and schools; colleges and DWP working with the Council and employers to support people with a learning disability gain paid employment. Personal budgets will be key to this. • Health and social services need to work together to develop appropriate joint packages of support for people especially for people with challenging behaviours and complex needs and as people age. High cost out of Borough residential placements are no longer the answer. • Barnet has developed some excellent examples of health facilitation in both primary care and secondary settings. There is a need to roll this out across mental health and all GP practices to ensure that people with a learning disability have equitable access to healthcare services.
  • 3. • The increased levels of demand in the absence of significant growth in budgets will require alternative patterns of service delivery to be established.