Adults with learning disabilities: Headlines
There are an estimated 7,500 to 8,300 adults with a learning disability living in Kirklees, of which 1,530 are known to Kirklees Council adult social care services.
By 2030 this will rise faster than nationally to between 8,300 and 9,400.
The largest increase will be people with a profound and multiple learning disability and those aged over 65.
The number of learning disabled adults is higher in younger non-white groups, especially in south Asian communities.
People with learning disabilities are far more likely to die early and to die of a preventable disease, with higher rates of respiratory problems, diabetes and heart disease as well as thyroid disorders and musculoskeletal problems. They are also more likely to be obese, have mental health problems including schizophrenia and/or epilepsy, and physical and/or sensory impairments. Those with Down’s syndrome aged over 50 years have a higher risk of dementia.
Demand for Kirklees Council funded adult social care services has grown by an average of 3.8% every year over the last five years and is predicted to grow year on year by at least 3%. This is because people with learning disabilities are living longer, also they and their families have increased expectations of an equal quality of life with non-disabled citizens, and children with complex needs are surviving beyond birth into adulthood and the increasing number of older parent/carer numbers.
Adults with learning disabilities: Why is this issue important?
Learning disability includes the presence of:
- A significantly reduced ability to understand new or complex information, to learn new skills (impaired intelligence).
- A reduced ability to cope independently (impaired social functioning) that started before adulthood, with a lasting effect on development.The predicted growth in terms of number of people with a learning disability is only 11% but the financial cost of meeting the health and social care needs will be significantly greater. Over the last five years the number of adults with learning disabilities with needs significant enough to be in receipt of a social care service has risen by 24% from 970 to 1,200. The last five years has seen a 3.8% growth each year in Kirklees Council funded adult social care services. Demand is predicted to grow year on year by at least 3%. This is because people with learning disabilities are living longer, also they and their families have increased expectations of an equal quality of life with non-disabled citizens, children with complex needs are surviving beyond birth into adulthood and the increasing number of older parent/carers no longer able to sustain their caring role. The greatest future care cost increase will be borne by the NHS caused by the increase in the number of people with profound and multiple learning disabilities and an ageing 65+ learning disability population.
Nationally it is estimated that around 2.4% of the adult population have a learning disability, although this is recognised as an under-estimate in communities with a high south Asian community. There are an estimated 7,500 to 8,300 adults with a learning disability living in Kirklees, of which 1,530 are known to Kirklees Council adult social care services. By 2030 there will be between 8,600 and 10,000 and this is above the national average growth rate. The largest projected increases will be in adults under 65 with profound and multiple learning disabilities, from 140 in 2011 to 210 in 2030 (50%), and in adults aged 65 and over with any learning disability age, from 1,360 to 2,080 (53%) . Nationally by 2030 there will be a 164% increase in the number of adults aged over 80 using social care services for people with a learning disability, replicating the national trend of an ageing population . This represents a relatively small number of people for whom we currently have very limited care services to meet their needs.
The predicted growth in terms of number of people with a learning disability is only 11% but the financial cost of meeting the health and social care needs will be significantly greater. Over the last five years the number of adults with learning disabilities with needs significant enough to be in receipt of a social care service has risen by 24% from 970 to 1,200. The last five years has seen a 3.8% growth each year in Kirklees Council funded adult social care services. Demand is predicted to grow year on year by at least 3%. This is because people with learning disabilities are living longer, also they and their families have increased expectations of an equal quality of life with non-disabled citizens, children with complex needs are surviving beyond birth into adulthood and the increasing number of older parent/carers no longer able to sustain their caring role. The greatest future care cost increase will be borne by the NHS caused by the increase in the number of people with profound and multiple learning disabilities and an ageing 65+ learning disability population.
Adults with learning disabilities: What significant factors are affecting this issue?
People with learning disabilities tend to have much poorer health than the general population with higher rates of respiratory problems, diabetes, heart disease, thyroid disorders and epilepsy, as well as musculoskeletal problems . They are also more likely to have sensory and physical disabilities as well as mental health problems, which tend to increase in severity as they grow older .
People with learning disabilities often face very significant disadvantages in terms of both their health status and their access to effective health services, as they tend to have much poorer health than the general population.
People with learning disabilities:
- Are 2.5 times more likely to have health problems than other people.
- Are more likely to be obese with 1 in 3 (33%) being obese compared with 1 in 4 of the general population
- Are more likely to have sight and hearing problems
- Have a greater risk of having thyroid problems, particularly those with Down’s syndrome
- Are less likely to take up breast and cervical screening
- Have increased vulnerability to early onset dementia (particularly those with Down’s syndrome) over the age of 50 
- Are 58 times more likely to die before the age of 50 than the general population.
- The median age at death for people with learning disabilities is about 25 years (30%) younger than for those who do not have learning disabilities .
- Over 80% of adults with learning disabilities engage in levels of physical activity below the Department of Health’s minimum recommended level, a much lower level of physical activity than the general population (53%-64%) .
Currently, about half of all adults with severe learning disabilities live with their families, often beyond the age of 40. This could change with the next generation of family carers as expectations change or as pressures on family life increase.
Adults with learning disabilities: Which groups are most affected by this issue?
Of the 1,530 adults with learning disabilities known to Kirklees Council adult social care services 4 in 5 (83%) are white, which broadly reflects the Kirklees population. However, within the 18-24 year age group 1 in 4 (25%) are from a minority ethnic background.
With a larger than national average minority ethnic community in Kirklees, there was a larger than national average increase in demand for support and services from this group.
Adults with learning disabilities: Where is this causing greatest concern?
The number of people with learning disabilities known to adult social care services has risen in all localities across Kirklees from 2011 to 2012. The rise has been greatest in Dewsbury (including Mirfield) where there was a rise from 18% to 20% (18.4% of the adult population live in Dewsbury), in Huddersfield South from 19% to 20% (17.9%) and in Huddersfield North from 14% to 15% (14.1%).
Adults with learning disabilities: What could commissioners and service planners consider?
- Give people with a learning disability greater choice and control over how their social care needs are met and what outcomes they wish to achieve. Provide clear, easy to understand information about choices and services and the support available that helps more people with learning disabilities take control of how their needs are met.
- Work more closely with carers to understand their needs and expectations, and improve long-term succession planning particularly with older carers and parents of young people entering adulthood.
- Increase opportunities for people with a learning disability to live in their own home, be supported to gain employment, develop skills, volunteer and make a positive contribution to community life without fear or prejudice.
- Enable people with a learning disability to live as independently as possible, ensure care providers support people to become more independent, achieve their goals in life and maximise the use of assistive technologies.
- As the increase in the proportion of young adults from BME communities with a learning disability, particularly the Pakistani community, is rising, consider the need for culturally appropriate and individualised services.
- Increase awareness of the needs of people with learning disabilities in the wider community, promoting their rights as equal citizens.
- Mainstream services should develop a more inclusive approach. They should better understand the needs of people with learning disabilities and make reasonable adjustment to help meet their needs and contribute to a more inclusive community in which people with learning disabilities can become equally valued members of the community.
- Ensure the changing needs of the learning disabled population are considered when make strategic long-term community planning decisions so people with a learning disability can lead a more inclusive lifestyle.
- Ensure all social and healthcare professionals develop a greater understanding and awareness of the needs of people with learning disabilities.
- Ensure there is provision of genetic counselling to address the issue of consanguinity in Kirklees.
Adults with learning disabilities: Date this section was last reviewed
Adults with learning disabilities: References
- Projecting Adult Needs and Service Information System (PANSI). Available from: pansi.org.uk and Planning4care Estimates; 2011.
- Emerson E, Hatton C. Estimating Future Need for Social Care among Adults with Learning Disabilities in England: An Update; 2011.
- Source: Disability Rights Commission. Equal Treatment: Closing the Gap; Available from: http://disability-studies.leeds.ac.uk/files/library/DRC-Health-FI-main.pdf
- Emerson E, Hatton, C. Estimating Future Need for Adults Social Care for People with Learning Disabilities in England. Centre for Disability Research, Lancaster University; 2008.
- Hatton et al. Key Highlights Of Research Evidence on the Health of People with Learning [Intellectual] Disabilities; 2002.
- Emerson et al. People with Learning Disabilities in England 2011; 2012.
- Emerson E. Underweight, Obesity and Physical Activity in Adults with Intellectual Disability in Supported Accommodation in Northern England. Journal of Intellectual Disability Research 2005; 49:134-43.
Adults with physical disabilities: Headlines
- 1 in 10 (25,500) people aged 18-65 years have a physical impairment and 20,000 adults of all ages have a sensory impairment.
- Many people are living longer as disabled people.
- Having an impairment does not always mean that a person is disabled – disability is the disadvantage people with impairments experience due to barriers that restrict their participation in different areas of life.
- Adults with impairment are much more likely than those without to experience disadvantage in relation to education, training, employment, housing, money and transport. The cumulative effect of barriers is to marginalise disabled people from the mainstream of society and the economy. Removal of barriers is the key to disabled people fulfilling their potential and having opportunities to play a full role in society.
- Across all adults who are limited a lot by their impairment:
- 3 out of 4 support family, friends or neighbours and 1 in 3 volunteer.
- 2 out of 5 feel good about the way they look and the same number want to make changes to feel better about themselves.
- Half feel well informed about public services and 1 in 3 feel well informed about how they can get involved in local decision making.
- Nearly half feel their views make a difference, higher than those with no impairment.
Adults with physical disabilities: Why is this issue important?
Disability should be distinguished from impairment and ill health. Disability is: a disadvantage experienced by an individual resulting from barriers to independent living or educational, employment or other opportunities that impact on people with impairments and/or ill health.
Impairments are long-term characteristics of an individual that affect their functioning and/or appearance. Ill health is the short term or long-term consequence of disease or sickness. Many people who have an impairment or ill health would not consider themselves to be disabled1.
The poverty, disadvantage and social exclusion experienced by many disabled people is not the inevitable result of their impairments or medical conditions, but rather stems from attitudinal and environmental barriers. This is the social model of disability2. In the social model, disability is viewed as the disadvantage, or restriction of activity and participation, caused by aspects of society which take little or no account of the needs of people with impairment3.
The types of barriers faced by disabled people include:
- Attitudinal e.g. among disabled people themselves and among employers, health professionals and service providers.
- Policy, resulting from policy design and delivery which do not take disabled people into account.
- Physical e.g. through the design of the built environment, transport systems, etc.
- Those linked to empowerment, as a result of which disabled people are not listened to, consulted or involved1.
Disabling barriers contribute to the disadvantages experienced by people with an impairment or ill health and can lead to4:
- Poorer health outcomes.
- A higher risk of being exposed to violence.
- Restricted participation.
- Reduced quality of life.
- Lower educational achievements.
- Less economic participation.
- Higher rates of poverty.
Locally in 2011 around 25,500 people aged 18-65 years had a physical impairment and 20,000 adults of all ages had a sensory impairment4. In Kirklees in 2012, just over 1 in 10 (11%) adults reported some form of visual impairment and 1 in 7 (15%) reported some form of hearing impairment. In those aged over 65, more than 1 in 6 (18%) reported a visual impairment and more than 1 in 3 (39%) reported a hearing impairment. 1 in 13 (8%) adults reported having a condition which affected their dexterity and 1 in 7 (15%) reported having a condition which affected their stamina, breathing or fatigue. There is no evidence to suggest a dramatic increase in the number of adults aged 18-64 with a physical or sensory impairment by 2030. However later onset conditions such as Parkinson’s disease, sensory impairment and arthritis will rise as the over 55 population grows and health conditions linked to diabetes and obesity are also set to increase as the number of people with these conditions rises4.
Stroke is one of the top three causes of death and the largest cause of adult impairment in England. Locally in 2011 it was estimated that 2,171 adults had a longstanding health condition caused by a stroke. By 2030 this is predicted to increase by 37%4 (see CVD section).
Many people are living longer as disabled people, both those who are disabled in later life and those who are disabled from birth (where life expectancy is improving). For example, half a century ago only 25% of those born with congenital heart conditions survived into adulthood, whereas now 90% do so. About half of those born with cystic fibrosis will live beyond 41, and a baby born today with the condition is expected to live even longer. There is also evidence of improved survival rates for children born with cerebral palsy. Increasing life expectancy for those people who are disabled from birth will also bring issues such as family carers reaching older age and managing their own impairments whilst still caring for their disabled children5.
Most disabled people are not born disabled (only 3% are). Most acquire impairments later in life (for example, 79% of disabled people over State Pension age reported that they acquired their impairment after age 50), and increasingly after retirement age (47% of disabled people over State Pension age acquired their impairment after the age of 65). Different types of impairment tend to start or become disabling at different times in people’s lives5.
Adults with physical disabilities: What significant factors are affecting this issue?
The latest surveys, research and statistics provide real opportunities for fresh insights to crystallise this story. For example, the Life Opportunities Survey (LOS), a major new longitudinal survey, based on the social model of disability, is starting to inform a new understanding of the dynamic nature of the disabled population and of the barriers faced by people with impairment5.
Participation restrictions in key life areas (additional disadvantages experienced by adults with impairment when compared to adults without impairment):
- Nationally: 1 in 6 (16%) experienced barriers to education and training opportunities (that is, the learning opportunities they had) compared with 1 in 11 (9%) adults without impairment.
- More than half (57%) experienced barriers to employment (that is, in the type or amount of paid work they did) compared with 1 in 4 (26%) adults without impairment.
- 3 out of 4 (75%) experienced barriers to using transport compared with 60% of adults without impairment.
- Nearly half (44%) of households with at least one person with impairment experienced barriers to economic life and living standards (that is, being able to afford expenses or make loan repayments) compared with 1 in 4 (29%) households without any people with impairment.
- 82% of adults with impairment experienced barriers in leisure, social and cultural activities compared with 78% of adults without impairments.
- Adults limited a lot by a long-term condition are more likely than adults not limited by a health condition to live by themselves (60% compared to 40%) and to rent their home (35% compared to 27%).
- 1 in 5 (21%) adults with a LTLC say their present home is unsuitable for their needs because it is unsuitable for their (or other householders’) mobility needs and 18% because it is unsuitable for them (or other householders) to cope with physical/mental health conditions or illnesses.
Education and employment
- Amongst those of working age over 1 in 5 (22%) of those limited a lot are presently working compared to more than half (57%) of those not limited.ii
- Half (50%) of those limited a lot would like to get a job but feel it is unlikely to happen in the next five years compared to 9% of those not limited6.
- More than half (59%) of those limited a lot would like to undertake further education/training qualifications but feel it is unlikely to happen in the next five years compared to 34% of those not limited6.
- Amongst those of working age, over 1 in 3 (39%) of those limited a lot have an annual income of less than £10,000 compared to 1 in 5 (20%) of those not limited.
- Almost 2 out of 3 (63%) of those limited a lot would like to have enough money to do the things they want in life but feel that it is unlikely to happen in the next five years compared to less than half (44%) of those not limited6.
- 1 in 3 (33%) adults with a LTLC said they had money worries all/most of the time in the past few weeks compared with just over 1 in 5 (23%) of Kirklees adults overall.
Health behaviours and health and wellbeing
- In 2012, almost 1 in 4 (24%) adults with a LTLC smoked compared with a Kirklees average of just under 1 in 5 (19%). More than 1 in 5 (22%) adults with a LTLC never did 30 minutes moderate physical activity in a day – twice the Kirklees average (1 in 10 (11%).
- Over 1 in 4 (26%) adults with a LTLC were obese in 2012 – significantly higher than the Kirklees adult population as a whole (1 in 5 (19%).
- Mean self-rated general health scores were significantly lower (58.4) amongst people with a LTLC than the Kirklees average (74.4) as were positive wellbeing scores (42.9 compared with 47.4).
- 3 out of 4 (72%) of those limited a lot would like to make a healthy change e.g. stop smoking, reduce drinking and feel this is likely to happen in the next five years, very similar to those not limited (78%).
- 2 in 5 (40%) of those limited a lot already feel good about the way they look, compared to more than half (55%) of those not limited. Another 2 in 5 (36%) of those limited a lot expect to make changes to feel better about the way they look in the next five years – the same as those not limited.
- 1 in 5 (21%) of those limited a lot feel in good physical shape compared to more than half (54%) of those not limited. Another 2 in 5 (39%) of those limited a lot expect to make changes to be in better physical shape in the next five years and the remaining 2 in 5 (39%) would like to be in good physical shape but feel that it is unlikely to happen in the next five years compared to 5% of those not limited6.
Motivation and resilience
Almost half (49%) of adults with a LTLC were identified as being in the least motivated Healthy Foundations (HF) segment. This segment (known as “Unconfident Fatalists”) is characterised by low motivation, low self-esteem and sense of control, and multiple health problems and risky health behaviours. Unconfident Fatalists (UF) make up the largest motivation segment in Kirklees and over half (55%) of all UFs have a LTLC.
Community and leisure
- 3 out of 4 (77%) adults who are limited a lot give support to family, friends or neighbours, the same as those not limited (78%).
- Only 1 in 8 (12%) adults who are limited a lot have participated in any arts and creative activities, compared with 1 in 5 (22%) of those not limited6.
- Adults who are limited are more likely to feel unsafe than adults not limited when outside in their local area, especially after dark (44% compared to 29%)6.
- Adults who are limited a lot are more likely than those not limited to say good transport links are important in making somewhere a good place to live (53% compared to 40%). They are also more likely to feel that public transport links need improving (28% compared to 23%).
Nationally there is a general picture of improvement. For example, there have been significant improvements in educational attainment, in the employment rate and employment rate gap, and in poverty rates. There have also been improvements in other factors contributing to quality of life, for example in access to transport (22% of disabled people experience difficulty accessing transport, a decrease of 5% since 2005) and access to goods and services (32% experience difficulty, a decrease of 8% since 2005). Attitudes towards disabled people have also been improving in some cases. Results from the British Social Attitudes Survey show that public attitudes towards disabled people have improved since 20055.
The 2011 “Your Place Your Say” survey positively tells us that locally:
- Equal proportions (45%) of adults limited and not limited by their health conditions feel well informed about local public services overall.
- People who are limited a lot are as likely as those not limited to feel well informed about how they can get involved in local decision making (29% compared to 28%).
- Equal numbers of adults limited a lot (21%) and not limited (22%) have had the opportunity in the last 12 months to express their views on local services or issues that affect them as a local resident and have actually expressed their views in some way (56%).
- Encouragingly, those limited a lot were much more likely to feel that their views make a difference (41% compared to 26% of those not limited).
- Nearly half (44%) of adults limited a lot feel that there is a good range of arts and creative opportunities in Kirklees, but only 1 in 8 (12%) of those people have spent time actually doing art and creative activities in the last 12 months.
- Nearly 1 in 3 (30%) of those limited a lot have given unpaid help in the last 12 months to a group, club or organisation, however this is well below the 45% of those not limited.
Adults with physical disabilities: Views of local people
The population of disabled people is highly diverse. It includes people from all age groups and across the income and education spectrum. There are large differences in impairment experienced by disabled people. Because of this, generalisations are often unhelpful. Disabled people with different impairments, from different socio-demographic backgrounds and facing different barriers will have very different day-to-day experiences1.
The overarching goal is for people with a physical/sensory impairment or long-term condition to live as independently as suits them, have the same opportunities, choice, control and freedom as other people living in Kirklees and experience the best possible physical and mental health and wellbeing.
Locally, many people with impairments and ill health are passionate about removing barriers for disabled people in Kirklees and some of these people are involved in local Partnership Boards and their various sub groups such as Kirklees Blind and Low Vision Group. Many local voluntary and community organisations are also working to support the full inclusion of disabled people and this is progressing as part of the personalisation agenda including the development of self-directed support, personal budgets and user led organisations.
Adults with physical disabilities: What could commissioners and service planners consider?
Removal of barriers that marginalise disabled people is the key to empowering disabled people, and giving them the opportunity to exercise their responsibilities as citizens – in the home, in the community and in the workplace1.
We need a step change in the way we view disability. Demographic trends will mean that increasingly we will all experience disability either as individuals or through our family and friends, and often in caring roles. An understanding of this should drive a change in attitudes and increased commitment to inclusion and accessibility5.
The key messages for local commissioners and service planners are to learn from the latest national surveys and research based on the social model of disability. Look at the interactions of societal barriers and impairments locally, understand who and why people have benefited from any improvements and where more progress needs to be made; giving disabled people in Kirklees opportunities to fulfil their potential and play a full role in society; resulting in improved health outcomes, participation and quality of life.
Adults with physical disabilities: References
- Prime Minister’s Strategy Unit. Improving the Life Chances of Disabled People; 2005.
- London: HMSO. The Disability Discrimination Act (DDA) Code of Practice; 2005.
- Office for Disability Issues, Department for Work and Pensions. Carried out by the Office for National Statistics (ONS). Life Opportunities Survey, Wave One Results 2009/11.
- Kirklees Council. Making it Personal Market Position Statement for the Social Care Market in Kirklees – Services to Support Adults with a Physical/Sensory Impairment or Long Term Condition 2012-2015.
- Office for Disability Issues, Department for Work and Pensions. Fulfilling Potential - Next Steps; 2012.
- NHS Kirklees and Kirklees Council. ‘Your Place Your Say’ Survey; 2011.
- NHS Kirklees and Kirklees Council Kirklees. Physical/Sensory Impairment and Long Term Conditions Partnership Board Goals 2010-2020.
i Office for Disability Issues. Life Opportunities Survey; Wave One Results, 2009/11. December 2011. http://statistics.dwp.gov.uk/asd/asd1/los/index.php?page=los
ii NHS Kirklees and Kirklees Council. Current Living in Kirklees (CLIK) survey. 2012.
Adults with physical disabilities: Date this section was last reviewed
Disabled children: Headlines
- 1 in 6 (5,946) primary school children and 1 in 5 (4,646) secondary school children require some extra assistance for SEN.
- 1 in 36 (1,809) children have a special educational need (SEN) requiring a statement.
- Of those who have a SEN with a statement or who are at School Action Plus, 22% (954) have a moderate learning difficulty, 159 (3.7%) severe, and 133 (3.1%) have a profound and multiple learning difficulty.
- Boys are far more likely than girls (23% compared to 16%) to have SEN.
- Children living in the more deprived areas of Kirklees were 2 to 3 times more likely to have SEN.
As well as their physical and/or learning disability, disabled children are at increased risk of experiencing further ill health, such as:
- Health problems associated with specific genetic and biological causes.
- Communication difficulties and reduced health literacy.
- Personal health risks and behaviours such as poor diet and lack of exercise.
- Problems with access to healthcare provision.
The needs of disabled children, young people and their families are unique to them, often complex, and change over time. The challenge is to understand these needs and develop a system around them that is flexible enough to meet the needs of the person and their families.
A lack of data at both national and local level about the numbers of disabled children, their needs and their use of local services, compounded by the absence of a consistent and universally applied definition of disability makes it difficult to determine the scale and scope of disability and to identify needs.
Disabled children: Why is this issue important?
Locally 1 in 8 (12%) 14-year olds reported that their everyday life was affected by a health problem and/or disability. The Disability Discrimination Act 1995 defines a disabled person as someone who has:
- a physical or mental impairment, which has substantial and long-term adverse effects on his or her ability to carry out normal day-to-day activities
- physical and mental impairments including sensory impairments such as those affecting sight and hearing. Mental impairment includes learning disabilities and mental health problems.
A Health Needs Assessment for Disabled Children in Kirklees was undertaken in 2009. It highlighted a lack of precise data at both national and local level about the numbers of disabled children and their use of local services. Nationally it is estimated that 21 in 1,000 children have moderate learning difficulties, 3.5 in 1,000 have severe disability and 1 in 1,000 profound and multiple disabilities. Children with moderate learning disability have an educational delay of three years and those with severe disability need help with communicating, mobilising and co-ordination. Some people with a learning disability also have physical and/or sensory impairments, mental health problems or other neuro-developmental disorders such as autism.
The numbers of children with SEN are used as a proxy for some form of disability. It is not an ideal measure as it includes children across such a wide range of physical, emotional and learning difficulties, and ranging from mild to severe . The main reasons for identifying SEN are mild to moderate learning difficulties. A ‘statement’ of SEN is issued for more severe learning difficulties1. Estimates for Kirklees in 2012 suggest that 1,809 children have a SEN requiring a statement. This equates to 1 in 36 (2.8%) of the school population, the same as the England percentage, and has remained fairly static since 2008 (2.9%). Of those who have a SEN with a statement or who are at School Action Plus (i.e. need help beyond what the school can provide), it is estimated that 954 (22%) have a moderate learning difficulty, 159 (3.7%) severe, and 133 (3.1%) a profound and multiple learning difficulty. 5,946 (1 in 6) primary school children and 4,646, 1 in 5 (18%) secondary school children, require some extra assistance for SEN.
Cerebral palsy remains the most common source of long-term physical disability in children – around 2 in 1,000 live births but more boys than girls.
Disabled children: What significant factors are affecting this issue?
Disability may arise because of biological, social or environmental factors or a combination of these. The majority of disabled children have genetic or pre-natal cause’s e.g. chromosomal abnormalities or infections during pregnancy. Low birth weight and/or extreme prematurity can also affect the child’s development – see infant mortality section. In pre-school years disorders of language development and autism may be identified. Progressive neurological, muscular or metabolic disorders also appear. During early school years other problems such as communication, behavioural, emotional and social problems may arise e.g. dyslexia and self-esteem issues.
The increase in the rates of children identified as SEN arises from a combination of the increase in the proportion of younger English adults who belong to Pakistani ethnic communities (see population section), and an increased survival rate among young people with severe and complex disability.
All disabled children are dependent to some degree on the adults who care for them. There is evidence that learning disabled people take less exercise than the general population and that their diet is often unbalanced with an insufficient intake of fruit and vegetables. Learning disabled people can find it hard to understand the consequences of their lifestyle on their health. Many learning disabled children are obese by adulthood and may suffer from conditions that are associated with being overweight6. Rates of smoking among young people with a mild learning disability are higher than among their peers5.
The frequency of mental ill health in children increases with the severity of intellectual impairment. So up to half of learning disabled children may need special services for emotional/mental health problems at some time during their childhood. Between 5 and 15% of learning disabled people also have challenging behaviour and many experience being bullied6.
Families, carers and young carers are central to providing care and support to disabled children. This can be demanding and place a huge amount of stress on families and carers, who should be supported, have their needs met and help shape services1, Low income and material deprived families are particularly vulnerable as a lack of resources affects parents’ aspirations, beliefs, stress, relationships and ability to support their children .
A number of public and third sector organisations provide a range of activities and support for disabled children and their families across Kirklees. For example, a menu of choice of inclusive short breaks for young people is provided in order to meet varying needs. Kirklees Active Leisure is working to improve sport and leisure provision and increase access for disabled young people. In addition, the PCAN (Parents of Children with Additional Needs Making a Difference in Kirklees) group offers support and provides a voice for parents and carers to influence the development of services.
Disabled children: Which groups are most affected by this issue?
Locally, the number of children and young people with a SEN or statement in males aged 0-19 is much higher than in females of the same age group. Nearly 1 in 4 (23%) males have a SEN and 4% a statement of SEN, compared to nearly 1 in 6 (16%) and 1.7% females respectively1.This is similar to the national picture3.
White and Pakistani origin children have similar levels of SEN – 1.6% with statements of SEN and 21-24% with SEN. This contrasts with children of Indian ethnicity who have 1.1% with statements of SEN and 14% with SEN1.
There is a higher rate of deaths and long-term disability in those of Pakistani origin, particularly from congenital abnormalities (see infant mortality section). About 1 in 3 of such children die before five years of age and most survivors experience chronic disability and are cared for with support from specialist community paediatric services.
Disabled children: Where is this causing greatest concern?
Huddersfield, Spen and Dewsbury had higher rates of SEN.Children living in the most deprived areas of Kirklees were between two and three times more likely to have a SEN. Nearly half of children (46%) with a SEN and 2 in 5 (43%) with a statement of SEN lived in the most deprived 20% areas in Kirklees1.
Disabled children: Views of local people
Using the “Aiming High for Disabled Children” framework7, parents were sent a questionnaire to express their views of health, education, care and family support services for their disabled child as experienced in the previous 12 months. Kirklees achieved 62 (out of 100) compared to a national average of 61 in 2009/10.
A significant proportion of parents and carers rated the short break service for both children with moving and handling needs and those with complex health needs as good or very good. However, the majority of parents and carers of disabled children feel that they are not routinely involved in shaping services. A lack of support in helping families to make informed decisions about treatment and care was also highlighted. In addition, families felt that they were not able to access appropriate information at every stage of their child’s life. Parents and carers would like to find out about services through GPs and schools.
Parents and carers also highlighted the assessment process as a source of frustration, both in terms of length and complexity. There was also a perceived lack of continuity and co-ordination between agencies. Parents and carers stressed the need for stronger links with adult services in order to better support 16-19 year olds through the transition period into adult care1.
Over half of disabled children and young people consulted, stated that they would like to undertake sports activities, but parents and carers felt that there is a lack of sports and leisure opportunities. Other activities that children and young people would like to undertake include arts, crafts, computer work, cooking, and going to clubs. Most of these children and young people said that needing someone to help them stops them from doing the things they like1.
Parents and carers have also emphasised insufficient emotional and practical support for parents and carers, insufficient out of school activities and a lack of training for parents.
Disabled children: What could commissioners and service planners consider?
The NHS Operating Framework and the Kirklees Children’s Trust Plan have confirmed a commitment to ensuring that disabled children are a priority. It is imperative that disabled children are given the support that they and their families need in order to fulfil their potential. Aiming High for Young People aims to improve access to services and empowerment for disabled children and families; having in place responsive services with improved service quality and capacity.
To better scale and scope out the needs of disabled children and young people the main agencies need to agree a definition of disability which all agencies work to. The newly formed Learning Disability Observatory hosted by NEPHO has devised standard criteria to define and collate data for learning disabled children . This approach should be adopted in Kirklees. A standard definition would also ensure that those physically disabled children who do not necessarily require a SEN are also identified.
Commissioners and service planners could also consider doing the following:
- Increasing engagement with parents and carers in the development of services.
- Commissioning services or designing current provision more in line with the needs of physical and/or learning disabled children including appropriate access. Services may include sports and leisure activities, out of school clubs with a focus on arts, cooking and computers, and services to support smoking cessation, alcohol misuse and sexual health.
- Improving the assessment process, links between agencies and developing a transition process to adult care that is sensitive to the identified needs of children, young people and their parents/carers.
- Ensuring GP registers for learning disabled people are managed and that general health checks are included in the annual check-up. The opportunity to discuss healthy behaviours should also be taken.
- Ensuring that the needs of disabled children and young people are met in relation to the general health and wellbeing challenges of all children and young people within Kirklees.
- Improving the role of Children’s Centres in relation to early intervention with disabled children and their families.
- Improving sign posting and information about appropriate services for parents, carers and disabled children.
- Ensuring support for parents and carers is identified and opportunities provided.
- Encouraging health and social care staff to be aware of how learning disabled children may communicate in hospital and other health settings, as they may not be able to tell health professionals how they feel, or what they want and need.
- Improving mental health provision for young people with learning disabilities and additional mental health needs.
Disabled children: References
- Spirul Intelligent Research. Needs Assessment for Disabled Children in the Kirklees District. NHS Kirklees and Kirklees Council; 2009.
- Learning Disabilities Observatory. Available from: http://www.improvinghealthandlives.org.uk hosted by NEPHO.
- DfE: Special Educational Needs in England, January 2012. Available from:
- Groch J. Cerebral Palsy Rates Decline in Very Low Birth Weight Children. MedPage Today; 2007. Available from: http://www.medpagetoday.com/Neurology/GeneralNeurology/4812
- Emerson E, Hatton C. People With Learning Disabilities in England. Centre for Disability Research; 2008.
- Emerson E, Baines S. Health Inequalities & People with Learning Disabilities in the UK: Durham: Improving Health and Lives. Learning Disabilities Observatory; 2010.
- HM Treasury. Aiming High for Disabled Children: Better Support for Families. London; 2007.
- Department for Children, Schools and Families: Parenting and Family Support: Guidance for Local Authorities in England; March 2010. Available from: https://www.education.gov.uk/publications/eOrderingDownload/DCSF-00264-2010.PDF
- NHS Kirklees. Consanguinity in Kirklees Draft Project Brief; August 2010.
- HM Treasury. Aiming High for Young People: A Ten Year Strategy for Positive Activities. London; 2007.
- Glover G. What We Mean By Learning Disabilities. Available from: http://www.improvinghealthandlives.org.uk/.
- Turner S, Robinson C. Health Inequalities and People with Learning Disabilities in the UK: Implications and Actions for Commissioners. Evidence into Practice Report no.1; 2010.
Disabled children: Date this section was last reviewed