Children with Special Educational Needs or Disabilities (SEND)
To reach their potential and make a positive contribution to society, children and young people with disabilities along with their families, need coordinated support from health, education, social care and voluntary services. This needs to be integrated and joined up to ensure the most effective and efficient commissioning and targeting of resources for this population.
Children living with special educational needs and/ or disabilities and their families can face multiple challenges that may require diverse and specialist responses from services. The needs of disabled children, young people and their families are unique to them, are sometimes complex, and change over time.
Our challenge is to understand these needs and develop a system around them that is flexible and responsive. The number of children living with a disability, living longer with a disability and the complexity of some disabilities is increasing due to improvements in medical technology and interventions.
A special note on: Families of children living with special educational needs and/ or disabilities
Disability cuts across gender, ethnicity, geography and socio-economic class. The families of disabled children are extremely varied in terms of their demographics. What they have in common is living with a child with SEND (1). Although it is important to remember that family experiences will be highly individual, some groups will have greater needs overall.
Families, carers and young carers are central to providing care and support to disabled children. This can be demanding and places a huge amount of stress on families, who should in their own right be supported, have their needs met and help shape services. Families on low income and experiencing material deprivation are particularly vulnerable as a lack of resources affects parents’ aspirations and ability to support their children. It can also lead to relationship, financial, physical and psychological strains.
Families in which one or both parents are disabled face particular challenges as they may need extra support to bring up a child with SEND. There is little information on the number of such families or the type of additional support they require. What is known is that children in families with both a disabled adult and a disabled child are particularly at risk of poverty.
What do we mean by Special Educational Needs and Disabilities?
Pupils with special educational needs are currently classified as follows:
From 2015, the School Action and School Action Plus categories have combined to form one category of SEN support. Extra or different help is given from that provided as part of the school’s usual curriculum. The class teacher and special educational needs co-ordinator (SENCO) may receive advice or support from outside specialists. The pupil does not have an education, health and care plan.
Education, Health and Care (EHC) Plans and statements of SEN
A pupil has an EHC plan or statement of SEN when a formal assessment has been made. A document is in place that sets out the child’s need and the extra help they should receive. Following the introduction of EHC plans in September 2014, statements of SEN and EHC plans are grouped together within the data. The transfer of statements of SEN to EHC plans was due to be completed in March 2018; in December 2018 there were less than 100 statements of SEN nationally (2).
Community assets and action (people helping people)
What would an asset-based approach to children living with special educational needs and/ or disabilities look like?
An asset-based approach is one that identifies and emphasises the strengths and abilities of people within a community. This can be both personal and community assets. Instead of focusing on what children living with special educational needs and/ or disabilities are unable to contribute and only their needs, asset-based approaches instead focus on finding the potential of individuals, recognising the value of their particular strengths and experiences, and enabling opportunities for these assets to grow.
An asset based approach to children living with special educational needs and/ or disabilities would be one where the value of skills, experience and knowledge of those children is recognised and utilised. Where organisations and experiences are truly inclusive and the user cohort reflects the wide range of children and young people with and without disabilities locally. Increasingly this inclusion is seen as important and organisations across the public, private and voluntary sector continue to remove boundaries for disabled children at strategic, operational and grassroots levels.
A flourishing user led sector would also be a hugely positive asset locally. There are pockets of great work but there are always opportunities for this sector to develop, particularly where young people with disabilities have the opportunity to be economically active.
The wider community also has a role to support children living with special educational needs and/ or disabilities who live alongside them. One of the ways this can be done is to raise awareness of issues that are faced and how everyone in the community can contribute to looking out for their family, friends and neighbours, or perhaps a stranger.
What are the community assets and action around this group?
Children with SEND have a great deal in common with non-disabled children. Children with learning or disability issues may have many struggles, whether academic, social, or both. But the challenges they face can help them develop key inner strengths. These qualities may sometimes get overlooked, but they’re important for meeting the demands of real life. All children have strong qualities and human frailties. But they are children first, and their learning disabilities define only part of what they are all about. (3)
The strength of positive family relationships at home is a hugely protective asset. Where family relationships are known to be poor, proactive work to strengthen this asset would be a useful preventative approach. It is this natural support and development that helps build resilience in all children, including those with SEND.
There are a wide range of community based assets that offer specific support to children living with special educational needs and/ or disabilities:
Ambitions 4 Kirklees– Build the skills for work and independent living of young people and adults with learning difficulties and disabilities.
Ability options– Provide fun and meaningful opportunities for members to learn new skills which will enable them to gain maximum independence. They welcome all adults and young people over the age of 18 with a mild to moderate learning disability and endeavour to meet their individual needs.
Birch Tree is a modern and dynamic learning centre with a warm, welcoming and relaxing atmosphere. Their aim is to provide a happy and safe environment where everyone who attends can develop to their full potential
C&K Careers – Offer specialist and targeted support for young people needing further help to access learning and work
Carers Count – Promote the wellbeing of carers so they can continue in their caring role and have a life of their own
Cloverleaf – KIN provide advocacy support and Kirklees involvement network. They can support you if you are over the age of 18 years, or transitioning from young person to adult services
Dark Horse– Theatre company including learning disabled actors featuring in their productions and non-learning disabled actors from the broader industry – which premieres new work
Employability solutions– A social enterprise working providing alternative education provision for young people aged 14 to 19.
Huddersfield Town Foundation provide activity sessions for people with disabilities.
Kirklees College is committed to supporting their students wherever possible regardless of background or situation. They offer a wide range of specialist support which is carefully allocated to ensure help is accessible to those who need it.
REAL employment– An agency working with people who have mild to moderate learning disability.
Shared Lives carers provide day support, or short breaks or a long term arrangement to adults who have been assessed as needing this unique and flexible type of support.
PCAN (Parents of Children with Additional Needs) are the independent, parent-led forum in Kirklees for all parents and carers of children and young people with additional needs.
SEND Karma – A bespoke service that is person-centred and led by families. It could include things like practical help, advocacy, information and advice, support to apply for grants and benefits and signposting.
Street bikes run activities, bike lessons and bike rides for people with disabilities. You can also learn bike mechanics or volunteer. No bike needed – they have all types of bikes hand-cycles, tandems, trikes and wheelchair bikes.
Touchstone Advocacy Kirklees is a new advocacy service for Kirklees delivered by Touchstone in partnership with Advonet. This service works to empower individuals across Kirklees to know their rights, make choices and decisions about their lives and to ensure that their wants, needs and wishes are heard.
What significant factors are affecting this issue?
Infant mortality (deaths before first birthday) and disability
Preterm birth, low birthweight babies (less than 2500g), stillbirth and infant mortality are indicators of the broader health and wellbeing of populations; they can be highly traumatic for those affected by them. Positive health behaviours, access to maternity and genetic counselling services and an increased understanding of the impact of pregnancy as a result of relationships within the family have all contributed to lower rates of preterm birth, stillbirth and infant mortality in recent years.
Babies who are born preterm (before 37 completed weeks of pregnancy) are not fully prepared to live outside the mother’s womb and have an increased risk of long-term physical and neurological health issues and mortality. Babies whose weight is normal are less likely to develop childhood asthma, become obese, or suffer diabetes late in life.(4) Babies who are born early are more likely to have a low birth weight although full term babies can also have a low birthweight. In 2017 in Kirklees, the proportion of full term babies who had low birth weight was 3.3% (which is not significantly higher than the rate for England, 2.8%) and there are clear inequalities depending on area; in 2018/19 Dewsbury and Mirfield District Committee had the highest rate (4.9%) whereas Huddersfield had the lowest (2.9%).(5)
In 2015-2017, Kirklees had a similar rate of stillbirth compared to nationally (4.7 compared to 4.3 per 1000 births)(6) The infant mortality rate in Kirklees (2015-2017) has dropped in recent years, but still remains above the England rate: 4.9 per 1000 births in Kirklees compared to an England rate of 3.9/1000 (6). Again there are inequalities depending on area; the infant mortality rate was highest in Dewsbury and Mirfield (5.7/1000) and Batley and Spen (4.5/1000) and lowest in Kirklees Rural (1.6/1000). (6)
Teenage pregnancy is also a public health issue due to the wider health and economic associations. There can be adverse impacts on training and employment and an increased risk of premature birth and low birth weight babies. In 2017, the rate of under-18 conceptions was 18.9 per 1000 which is similar to the national average (17.8/1000). (7)
Consanguinity remains an issue within the Pakistani population locally, clinical advances have meant a greater number of these babies are living beyond their first year, however a proportion of children are growing up with disabilities and conditions relating to prematurity and congenital abnormalities.
A special note on: Children with life-limiting conditions
Life-limiting conditions are those for which there is no reasonable hope of cure and from which children will die, either during childhood or in early adulthood. Having such a condition brings with it medical and emotional complications which add to the burden of disability and ill health. Many children with life-limiting conditions are also disabled and have additional long-term needs. The most common life-limiting conditions (but each accounting for less than 25% of deaths) are cancer, perinatal conditions and congenital abnormalities, conditions relating to the nervous and muscular-skeletal systems, and organ failure.
Communication and Language Development
A child might be delayed in responding to sounds, simple requests or beginning to talk compared to the typically developing child, this can have an impact across the development of a child because they can become increasingly behind their peers.
Children living in poverty in the UK suffer disproportionately from language delay. Poverty can strongly reduce parents’ ability to respond to their child’s early language needs and offer a home learning environment that enhances language skills. As a group, children from disadvantaged backgrounds more commonly have reduced developmental opportunities. (8)
Issues around continence affect a number of children; children and young people with physical and learning disabilities frequently experience bladder and bowel dysfunction. Local service intelligence tells us around one in five disabled children have continence problems (9). This was more likely in those in the Specific Learning Disability and Profound and Multiple Learning Difficulty groups where double incontinence is an issue for one in five children. It can be much more challenging to toilet train a disabled child and parents of disabled children are more likely to need advice to help them toilet train their child.
Feeding and dental hygiene
Children with neuromuscular conditions can find it difficult to chew and swallow food (9). Children with learning disability or autism spectrum disorders (ASDs) can have difficulties that may relate to overeating, under eating or being very selective about what they will eat (9). Percutaneous endoscopic gastrostomy (PEG) is an endoscopic medical procedure in which a tube (PEG tube) is passed into a person’s stomach through the abdominal wall, most commonly to provide a means of feeding when oral intake is not adequate. Around 4% of the local special school population are fed via a PEG tube (9).
Maintaining oral hygiene and dental health in disabled children can be challenging, leaving these children more at risk of suffering from dental conditions. Children with learning disabilities or autism can find being examined by a dentist frightening and some will not tolerate treatment. Children with a physical disability can find it difficult to brush their teeth or access a dental surgery. Children with certain genetic conditions are more prone to misaligned or differently positioned teeth are also likely to have additional dental hygiene needs.
Some behavioural difficulties are more likely in children with particular medical conditions or disabilities for example, attention deficit hyperactivity disorder (ADHD) and autism spectrum disorder (ASD). Children with learning, sensory or physical disabilities may have delayed or no speech and need alternative ways to communicate (10). An assessment of our local special school population found 10% of the special school population having challenging behaviour (9). This potentially presents greater issues for carers as the child grows up.
Attainment amongst the EHCP and SEN Support population is below or just below national averages at almost every level. 2018 National results are provided below as the latest public attainment comparison. [OR1] Early indication for 2019 Primary attainment nationally shows that results have increased by 1% for all pupils.
Early Years Foundation Stage Profile Pupils achieving a Good Level of Development (GLD) or above at the end of Reception:
Key Stage 1 Pupils achieving the Expected Standard (EXS) or above in Reading, Writing and Maths and combined in all three (RWM) at the end of Year 2:
Key Stage 2 Pupils achieving the Expected Standard (Exp) or above in Reading, Writing and Maths combined (RWM) at the end of Year 6 Primary School:
GCSE Pupils achieving Average Attainment 8 Scores in 8 chosen subjects at the end of Secondary School:
Progress of Pupils between Key Stage 2 (end of Primary school) to GCSE (end of Secondary School) in 8 chosen subjects:
Zero is the national benchmark for all pupils. The Department of Education’s threshold for all pupils falling below average is -0.50
Free school meal eligibility
Locally, there are around two in five (45%) pupils in special schools known to be eligible for and claiming free school meals, in comparison to state primary schools at 18% and state secondary schools at 22%. Rates in England are 38% for special schools, 16% for state primary and 14% for state secondary (11).
The housing needs of disabled children affect the whole family. Issues around climbing stairs, lack of space, downstairs facilities, cold and damp are most common (12). Locally, two in five (44%) carers tell us that their home is too small for them, one in three (39%) felt their home was in need of repair and one in four (22%) felt their home was unsuitable for their mobility needs or the needs of people in the household (13). As children grow up, particularly those with mobility problems, there are additional requirements such as movement and handling equipment and it is not uncommon for hoists and other specialist equipment being required for older children who are not ambulant.
Wheelchairs, technology and other equipment
Just under 700 children locally receive a wheelchair through local joint wheelchair services (14). NHS England is working together with local commissioners and a range of people and organisations to improve wheelchair services, to ensure that all wheelchair users receive the best possible support for their needs (14).
There is a developing range of assistive technology that is available and designed for the particular needs of the SEND population. Technology will play an increasingly important role in providing care and support. While technologies that assist in health and social care could be significant contributors to the growth in expenditures in the short term, they could potentially reduce costs significantly in the medium and long term. Over recent years the costs of previously expensive technology have come down in price. This is expected to be a growth area, particularly as people who have grown up with technology age.
Which groups are affected most by this issue?
Locally, the number of male children and young people aged 0-19 years with a SEND or EHC plan is much higher than the number of females. In January 2019, a third (33%) of pupils with SEN are female and two thirds (67%) are male (15).
There are 383 children currently on the disability register. Of these, 200 (52%) do not have an EHCP (142 male (71%), 58 (29%) female) (15).
If SEN support is taken into account, only 95 children on the disability register do not have SEN (64 (67%) male, 31 (23%) female) (15).
Three in five (60%) SEN students are of White British ethnicity and one in four (24%) are South Asian. The proportion of students with SEN is similar for both White British and Pakistani ethnic groups, at around one in six (14%) children. Of these, 3% of both Pakistani and White British SEN students are on an EHCP. In comparison, 8% of Indian students are SEN with 2% on an EHCP (15).
Whilst the SEN rate amongst Pakistani children is broadly the same 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 one in three 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.
A special note on: Children with multiple disabilities or conditions
Many children with SEND do not have a single disability or need. This is best understood in our local special school population. Of the 763 children in special schools locally nearly 2 in 3 (65%) have a secondary disability or condition (15).
The most common additional disabilities or conditions are:
- Autistic Spectrum Condition
- Behavioural Difficulties
- Cerebral Palsy
- Down’s syndrome
- Global Development delay
- Hearing Impairment
- Mobility Problems
- Moderate learning disability
- Physical Disability
- Severe learning disability
- Significant developmental delay
- Social emotional, mental health difficulties
- Speech, Language and Communications Difficulties
- Visual Impairment
This is important because a child with multiple physical and learning disabilities is likely to need specialist care and support. They are also likely to need support from a range of agencies and require greater levels of care at home and in school.
The other important issue is that a primary or secondary condition or disability can reduce a child’s ability to express themselves or describe how a condition is affecting them. This is of particular concern if a child finds it difficult to express pain or discomfort; this inability may lead to frustration which manifests itself as a behavioural problem rather than a pain problem.
Disability can occur in any socioeconomic group. However research suggests that disability appears to be not simply an accident of birth but can be a “confluence of intergenerational poverty and modern medical progress”. The extent to which factors such as low income precede or follow disability is difficult quantify locally, but what we know is that poor diet and stressful living conditions do increase the chances of premature birth and low birth weight which are indicators of future disability (16).
A special note on: Vulnerable children with disabilities
As with the general child population, typically a series of complex factors lead to disabled children and young people becoming looked after, which may combine around family stress, the capacity of families to meet the care needs of their disabled child, neglect or abuse and in some instances parental illness and disability.
The experience of being looked after also potentially increases the likelihood of developing emotional ill health issues. This is likely to be primarily assessed as a SEN; it should be borne in mind some children solely present with emotional and behaviour challenges under the heading of disability, which may inflate overall SEN in the looked-after population.
Children in Need – There are currently 2540 Children in Need in Kirklees. Of these 1 in 4 (24%) have an identified SEN or SEND. These range across all areas of need.
Children with Protection Plan – There are currently 340 CYP in Kirklees with a Child Protection Plan, of these 1 in 5 (20%) have an identified SEN or SEND.
Looked after Children – Locally, we know there are around 632 looked after children of school age, of which over 1 in 4 (29%) have a SEN.
As disabled young people leave care and move into their young adult lives, little is known about their experiences during the transition from child to adult services or the potential multiple disadvantage they may experience on the grounds of both disability and care leaver status. (17)
What does the local data tell us?
There are 67,605 pupils on roll at Kirklees maintained schools and academies, excluding nursery schools and pupil referral units (15). Around 1 in 8 (13%) have some level of special educational need or disability (SEND). This equates to around 9,046 children locally (15).
Around 1 in 11 (9%) of pupils on roll at Kirklees maintained schools and academies, excluding nursery schools and pupil referral units have a SEND requiring Special Education Needs (SEN) support. This equates to around 7,122 children of whom there are more of primary school age (4,533) than secondary school age (2,589).
Currently there are 1,940 pupils on roll at Kirklees maintained schools and academies, excluding nursery schools and pupil referral units (3% of the school population) who have an Education, Health and Care Plan (EHCP). EHCPs were introduced from September 2014 as part of a range of SEND reforms. Prior to this, children would have had ‘statements’ of SEN.
There are weaknesses in local SEND data, for example, whilst a single primary issue may be recorded for a child, they may have multiple issues relating to mental or physical health, communication or behaviour. Below is an overview of the local SEND population based on identified primary need, or the need that has greatest impact upon their daily lives.
Communication and interaction needs
Autistic Spectrum Condition (ASC)
Autistic spectrum condition (ASC) is a lifelong condition characterised by impairments in three main areas: social interaction, communication and the presence of repetitive behaviours (known as the triad of impairments). The term spectrum is used due to the significant variations between individual cases, including severity and presentation of the triad of impairments; differing IQ levels; and general functional abilities. Autistic Disorder, Asperger Syndrome and High Functioning Autism are all types of Autistic Spectrum Condition. There are 431 children locally with a diagnosed ASC. Table 1 shows a breakdown of ASC by school population in Kirklees. National estimates suggest around 1% of the whole population have an ASC suggesting that many children and adults may be living with an undiagnosed ASC condition (18).
Some children and young people find it difficult to listen, understand and communicate with others and may need support to develop the surprising number of skills involved.
Children with Speech, Language and Communication Needs (SLCN) may have difficulty with one or more speech, language or communication skills. For example, a child may have difficulties with listening and understanding or with talking or both. Each child also has a unique combination of strengths. This means that every child with SLCN is different.
A recent assessment of the levels of communication of children in local special schools found that 34% of children reviewed had limited communication and 5% were non-verbal; the majority of these were in the Specific Learning Difficulties (SLD) and Profound and Multiple Learning Difficulties (PMLD) groups (9) Table 2 shows a breakdown of speech, language and communication needs by school population.
Learning disabilities are usually detected in childhood and can be caused by genetic factors, infection prior to birth, brain injury at birth, brain infection, brain damage after birth or the cause may be unknown. There are many conditions associated with learning disabilities, perhaps the most well-known being Down’s Syndrome. The effects of learning disabilities can be far-reaching, including issues with speech and communication which can result in, or be associated with behavioural problems. There are 3,452 children in Kirklees who have some form of learning disability; a breakdown by type is show in table 3 below. Learning disability does not include all those who have a ‘learning difficulty’ which is more broadly defined in education legislation.
Physical disability and sensory impairment
There are many forms of physical disability and sensory impairment that can affect children across the life course. In Kirklees there are 631 children with physical disabilities or sensory impairments; a breakdown is shown in table 4 below.
Cerebral palsy is the most common physical disability in childhood. Cerebral palsy describes abnormal brain development or injury as the brain develops before, during or after birth. It is a non-progressive motor impairment condition affecting approximately 2 per 1,000 births. As children with cerebral palsy grow the impact may change. In Kirklees approximately one in 400 children suffer some form of cerebral palsy (20).
There are some long-term health conditions that may not be perceived as ‘disabilities’ but are chronic in nature and can have an impact on a child’s development in more subtle ways (e.g. through days lost at school, inability to partake fully in physical activities, need to take medication regularly). These include asthma and diabetes.
Asthma is a common childhood condition which affects almost 1 in 5 (18%) 14-year olds in Kirklees (21). The irritants that can trigger asthma differ for each person; however cigarette smoke, poor housing conditions (e.g. damp) and poor air quality are common triggers. For example, children who are around parents or other family members who smoke increases their risk of developing childhood wheeze. (22) Exposure to a number of risk factors can occur even earlier in the life course. Mothers who smoke during pregnancy are more likely to have babies with breathing problems and an increased risk of miscarriage and premature labour (23).
Epilepsy may have a known cause such as infection, stroke or head injury, a genetic tendency or the cause may be unknown. Epilepsy can start at any age but is most often diagnosed in childhood and can arise from birth and pregnancy issues, infection or accident. Nationally around one in every 240 children under the age of 16 (51,500 young people ) will be diagnosed with epilepsy (24). In Kirklees this equates to approximately 282 school aged children.
Social, emotional and mental health
Social, emotional and mental health (SEMH) needs refer to special educational needs in which children/young people have severe difficulties in managing their emotions and behaviour. They often show inappropriate responses and feelings to situations which means that they have trouble building and maintaining relationships with peers and adults and they can also struggle to engage with learning and to cope in mainstream education. Children with SEMH will often feel anxious, scared and misunderstood. Table 5 shows a breakdown of SEMH needs by school population.
Undiagnosed or other needs
There are a number of children with a range of other physical, emotional and learning needs that are not formally identified but education professionals find these children benefit from additional support or interventions. These are shown in table 6.
Understanding future trends
There are two important factors that will influence the future shape of the local SEND population. Firstly we expect the general 0-18 population to increase by around 1.5% over the next five years, this would equate to around 1,600 additional children (ONS 2016-based population projections for 2019-2024). So the proportion of SEND children is likely to grow at least the same rate (9).
The second factor affecting future projections is advances in medical interventions. We are already seeing increases in the numbers of profoundly disabled children who previously would have not survived beyond the first few years of life. There is nothing to suggest that this trend will reduce (9).
Taking both of these factors into account, we may see an increase in the numbers of SEND children and an increase in the number of children with the most complex or profound needs (9).
Which groups are affected most by this issue?
Prevalence by Gender
The gender mix of the EHCP cohort is dominated by males, with 2 in 3 EHCP recipients being male and 1 in 3 being female. This matches the national pattern of gender in the EHCP cohort, but it should be remembered that females in the general 0-25 population are, on average, 49% of the population (11).
A special note on: Disabled children entering adulthood
The transition to adulthood for young people with disabilities can be a difficult time, particularly where this may involve transitioning between services. Preparing children and young people for adult life should start as early as possible in order to allow them to develop the skills and knowledge they will need to have choice and control over their adult lives. Disabled young people and their families need to be supported to understand their rights and professionals need to be clear on how young people can be supported to develop the skills they need in order to be able to make informed decisions about the future (25).
Until the age of 18, services for children and young people with long-term health conditions are provided by child health and social care services. From 18, they’re usually provided by adult services. Between the ages of 16 and 18, the child will start a “transition” to adult services.
Planning for this transition should begin when a child is in Year 9 at school (13 or 14 years old) at the latest (26). Transition should be a well-managed ongoing process rather than a single event, and tailored to suit the child’s needs. Children and young people should be encouraged and supported to think about and articulate their future hopes and ambitions. Especially around independence, living arrangements, skills and employment.
Prevalence by Ethnicity
Similarly to gender, the EHCP cohort and the ethnicity of the general 0-25 population has been compared. Unlike gender, ethnicity tends to match the general population with two exceptions; those in the Pakistani ethnic group are slightly over-represented in the EHCP cohort, there are 2% more children and young people from Pakistani ethnic group in the EHCP cohort. Those in the Indian ethnic group are slightly under-represented in the EHCP cohort.
Although the ECHP cohort matches the general 0-25 population, there are variances when categories of need are split by ethnicity. The table below highlights some of these variances. It shows that White Other and White British groups have higher than average SEMH & complex SEMH. Pakistani and Indian cohorts have higher than average Speech, Language and Communication Needs and the Black cohort has far higher Autistic Spectrum Disorder(27).The table (11) highlights over or under-representation when compared to the ethnicity makeup of the entire EHCP cohort.
A special note on: The high needs cohort and deprivation
The most widely adopted measure of deprivation in England is the Indices of Multiple Deprivation (IMD) (27).The IMD combines a number of indicators into a single deprivation score for geographic areas.
Poverty and deprivation are complex issues with no single cause but rather a multitude of contributory factors. Deprivation can affect life chances, the ability to find and maintain employment, the quality of housing which is affordable and the ability to ensure that it is heated to a comfortable level. Living in poverty also has a significant impact on physical and emotional health.
Nationally, in the general population the gap in life expectancy between people living in the lowest and highest income neighbourhoods is six years. In Kirklees, people in Dewsbury West can expect to live 2.3 years (females) to 4.4 years (males) fewer than people in Kirkburton (based on life expectancy at birth calculated between 2015 and 2017).
When we compare the EHCP cohort with the general population we see they are over represented in the worst 10%, 20% and 30% deciles. The imbalance reverses in all other deciles; this trend has been stable for the last few years (11).
When IMD is analysed at category of need level, there are some minor variances in each need category. However, there are large variances in the Complex Communication and Interaction cohort who are under-represented in more deprived areas and over-represented in more affluent part of Kirklees.
For further information please see: KJSA Poverty Section
Where is this causing greatest concern?
SEND children reside across Kirklees; there are of course a small number of children who are not known to services and therefore not included in this overview.
Children with SEND live across Kirklees (11). In order to give a clear picture of prevalence it is best to look at disability as a ratio per 1000 children, so for instance 34.5 children in every 1000 have a moderate learning difficulty. Table 7 and 8 show that there are peaks across each type of disability and in each locality.
Views of Local People
There has been some recent local research to help develop a Transition protocols for schools in Kirklees (28). It aimed to gain clearer knowledge, and insight into the experiences of transition from the perspective of young people who have Special Educational Needs and Disability (SEND).
- It found in participants that often primary school was a relatively positive experience for them, whereas the move to high school was too big a move and somewhat traumatic.
- There were issues and anxieties in new schools of being late for classes, teachers shouting and too much homework.
The work also reinforced the need to work with and recognise individual needs when developing an individual transition plan, a plan that worked for them proved key to their sense of security within the school resulting in successful smooth transitions.
The research highlighted issues around transitioning from primary to high school, especially the short time scales used when pupils with SEND move school phases. Another common issue was the lack of (high school) teachers’ understanding of their needs as issues which caused them difficulties.
As part of the discussion with/around the experiences of students within a sixth form special school setting transitioning to college, the difficulties faced by families as a whole once their child left school was highlighted as a significant issue of concern. Exploring the impact that leaving compulsory education has on young people with SEND and their families would allow some insight to be gathered around specific issues. This could include issues such as health and well-being, accessing support services/ facilities and youth loneliness which was highlighted as an issue of growing concern particularly for vulnerable young people within the findings of the 2018 Kirklees Year 9 survey (29).
My Journey: The day-to-day experiences of young people with SEND.
A recent piece of local research (28) with children living with special educational needs and/ or disabilities reinforced that their lives feature the same concerns and aspirations of more able children. The research investigated daily routines, school life and leisure time, as well as longer term goals and views about adulthood.
The majority of the young people involved stated that they got ready in the morning independently. Many, not unlike their peers said their parents played an important caring role, particularly in relation to medication and physiotherapy.
On the whole the cohort felt that school had an inclusive approach to helping them achieve their potential. They felt that their schools made activities and learning accessible to all. They spoke of activities being customised and additional support staff helping where necessary.
When it came to after school activities those who were reliant on timed school transport found it harder to be involved, but older children were sometimes able to travel independently.
There were a group of children with hidden disabilities that felt that their peers were often unaware of their disabilities and how it impacted on their everyday lives which often made making and maintaining relationships with their peers difficult.
For most young people, they stated that their free time was taken up by playing on their consoles, iPads, smartphone or watching television. Many used Social Networking stating that virtual communication was an essential way of staying in touch with their peers. Many young people spoke passionately about caring for pets. They described the responsibility of making sure their pets were properly looked after and loved as something that brought much daily pleasure.
When they were asked about the future some young people reported feeling anxious and nervous about adult working life. They had career aspirations but, like many young people weren’t entirely sure whether they would realise their dream careers. They were also positive about finding and developing personal relationships, with some wanting to start families.
The Young People’s Survey 2018
The last Young People’s Survey was conducted in 2018 (29) and included a sample of over 2000 students in year 9 at mainstream schools across Kirklees. Overall one in 11 (9%) said they had a special educational need or a learning difficulty, of these over a third (38%) did not feel their school supported them enough. Over one in eight (14%) of all students had a health condition or disability that affects their everyday life. Of these, more than one in four (27%) felt like they didn’t get enough support for their health conditions from health services (29).
SEN students and those with a health condition that affects their everyday life are significantly more likely to have been bullied; both physically and in other ways. Over a quarter (28%) of SEN students have experienced physical bullying (29). In comparison, one in twelve (8%) non-SEN students have experienced physical bullying (29).
Those students who have a health condition that affects their everyday life are twice as likely (21%) to be physically bullied compared to those without a health condition (10%).
SEN students rated their level of happiness significantly lower compared to non-SEN students (31% vs 15% reporting a score of 0-3 inclusive, on a scale where 0 was ‘not at all’ and 10 was ‘completely’). They also rated their ability to deal with problems well significantly lower in comparison to non-SEN students (34% vs 21% reporting they had been dealing with problems well ‘rarely/none of the time’). This is also the case for students with a health condition that affects their everyday life in comparison to students without in both happiness and dealing with problems well. (32% vs 16% gave themselves a low happiness rating; 35% vs 22% rarely/never dealt with problems well).
Parent and Carers interviews
As part of a series of interviews with families, the Care Quality Commission (30) asked a range of parents and carers what made a good service. Families and individuals outlined what is important to them:
- Ensuring that the right support is given.
- Approachable and available service.
- Good timeframe for appointments.
- That there are more specialists in each field who have a designated amount of patients that they can effectively see regularly.
- It must take into account the specific needs of the family.
- Being treated as a client, not as them doing you a favour and you being a drain on resources.
- People listening and telling you what is available.
- Meeting all the needs of the family.
- Treating people with respect, listening to parents.
- Understanding of child’s special needs.
- Fewer hospital admissions.
- Assessments should be done early and there should be continuity of staff.
- Services talking to each other.
What could commissioners and service planners consider?
Data and Intelligence:
- Develop a greater understanding of the needs of children aged 0-5 who are or might have a disability; this is a data gap locally and nationally.
- Model the future profile of the disabled child population based on trends in birth rates and migration.
- Better understand the relationship between poverty, neglect and family dysfunction.
- Embed a holistic approach to understanding the needs of vulnerable children with SEND and their families.
- Develop a better understanding of the profile of disabled children and the needs of their parents/ carers.
- Review the approach to assessing educational ability, attainment and aspirations of disabled children.
- Use an evidence-informed approach – research consistently shows that early intervention and promoting resilience in children and families can help them manage their vulnerabilities and avoid the need for high-end intervention.
- Commission support that builds on existing strengths and assets that support vulnerable children and which responds to unmet needs in particular places or amongst particular communities.
- Build on current assets that support disabled children to prepare for independence and adulthood.
- Ensure that the views and experiences of children and young people living in Kirklees are the centre of service design.
- Ensuring people’s independence is promoted, encourage positive risk taking that will achieve better life outcomes.
- There is a need to create more training opportunities, internships, more flexible pathways to employment and job opportunities for young people with disabilities.
- The need to recognise and maximise the benefits and potential of assistive technologies that enable children with a disability to live independent lives.
Collaboration and Development:
- There needs to be a culture of forward thinking, lifelong planning in partnership with families to help shape future care and support services required in adulthood.
- Upskill and provide guidance for professionals to ensure we have a highly skilled workforce that is able to care for and support the most complex disabled children.
- Plans and strategies need to take account of transport and access to a broader range of support opportunities that are chosen and designed with children with SEND.
- There is a need to ensure they receive good information and advice, making sure good carer support and good community support is available to enable them to continue in the caring role for as long as possible.
- There is the need for a more thriving independent/third sector care and support market that is able to offer a wide range of personalised services, including flexible support options in the family home and local community to meet the needs of disabled children now and in the future as demand grows.
- A more community inclusive approach that enables children with a disability to access mainstream community services as an alternative or alongside specialist disabled children provision only.
References and additional resources
- Langerman C, Worrall E. Ordinary Lives Disabled children and their families: A guide for donors and funders. 2005.
- Department for Education. Special educational needs in England: January 2019 [Internet]. 2019. Available from: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/814244/SEN_2019_Text.docx.pdf
- Lenz B, Keith E, Sturomski NA, Corley MA. Serving Adults with Learning Disabilities: Implications for Effective Practice. [Internet]. 1998. Available from: http://files.eric.ed.gov/fulltext/ED430078.pdf
- Public Health Wales. Low Birth Weight Review of risk factors. 2014.
- Kirklees Council. Low birth weight by District Committee. 2016.
- Office for National Statistics. Stillbirth- Local Authority [Internet]. 2015. Available from: https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/livebirths/datasets/birthsummarytables
- Office for National Statistics. Full teenage Conception Statistics [Internet]. 2014. Available from: https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/conceptionandfertilityrates/datasets/conceptionstatisticsenglandandwalesreferencetables
- Ramsbotham LR. The Links between Speech , Language and Communication Needs and Social Disadvantage [Internet]. 2013. Available from: https://www.rcslt.org/wp-content/uploads/media/Project/RCSLT/rcslt-social-disadvantage-factsheet.pdf
- Kirklees Council. High Needs Assessment – An overview of pupils and students with Special Educational Needs and Disability (SEND) with an Education, Health and Care Plan (EHCP). 2019.
- Contact a family. Health services for disabled children and young people Introduction [Internet]. 2015. Available from: https://contact.org.uk/wp-content/uploads/2021/03/health_services_for_disabled_children.pdf
- Department for Education. Schools, pupils and their characteristics: January 2019 [Internet]. 2019. Available from: https://www.gov.uk/government/statistics/schools-pupils-and-their-characteristics-january-2019
- Beresford B. The needs of disabled children and their families. [Internet]. Vol. 76, Social Care Research. 1996. Available from: http://www.ncbi.nlm.nih.gov/pubmed/23122443
- Kirklees Council, NHS Greater Huddersfield CCG, NHS North Kirklees CCG. Current Living in Kirklees Survey. 2016.
- NHS England. Wheelchair services: Operational Data Collection – Quarter 4 dataset (January – March 2019) [Internet]. 2019. Available from: https://www.england.nhs.uk/publication/wheelchair-services-operational-data-collection-quarter-4-dataset-january-march-2019/
- Kirklees Council. School Census January 2019. 2019.
- Blackburn CM, Spencer NJ, Read JM. Prevalence of childhood disability and the characteristics and circumstances of disabled children in the UK: secondary analysis of the Family Resources Survey. BMC Pediatr [Internet]. 2010 Apr 16 [cited 2017 Apr 21];10:21. Available from: http://www.ncbi.nlm.nih.gov/pubmed/20398346
- Kelly B, Dowling S, Winter K. Disabled Children and Young People who are Looked After: A Literature Review. Belfast; 2012.
- The National Autistic Society. What is Autism? [Internet]. Available from: http://www.autism.org.uk/about/what-is/asd.aspx
- Department for Education. Schools, pupils and their characteristics: January 2016 [Internet]. 2016. Available from: https://www.gov.uk/government/statistics/schools-pupils-and-their-characteristics-january-2016
- Kirklees Council. Neurological Conditions [Internet]. 2013. Available from: http://kjsa.kirklees.gov.uk/jsna/specific-conditions/neurological-conditions
- Kirklees Council. Children and Young People’s Survey. 2014.
- Asthma UK. Quit smoking to manage your asthma better [Internet]. Available from: https://www.asthma.org.uk/advice/manage-your-asthma/quit-smoking/
- Asthma UK. Asthma and pregnancy [Internet]. Available from: https://www.asthma.org.uk/advice/manage-your-asthma/pregnancy/
- Joint Epilepsy Council. Epilepsy prevalence , incidence and other statistics. Joint Epilepsy Council of the UK and Ireland. 2011.
- Council for Disabled Children. Council for Disabled Children – Adulthood [Internet]. 2019. Available from: https://councilfordisabledchildren.org.uk/our-work/adulthood
- NHS. Moving from children’s social care to adult’s social care [Internet]. 2018. Available from: https://www.nhs.uk/conditions/social-care-and-support/transition-planning-disabled-young-people/
- Department for Communities and Local Government. The English Index of Multiple Deprivation ( IMD ) 2015 – Guidance What is the Index of Multiple Deprivation 2015 and how can I use it ? 2015;1–7. Available from: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/464430/English_Index_of_Multiple_Deprivation_2015_-_Guidance.pdf
- Kirklees Council. Young People with SEND Transition Experience Summary Report: Experiences of Transition from a young people with Special Educational Needs and Disability (SEND) perspective. 2019.
- Kirklees Council. Young People’s Survey 2018. 2018.
- Care Quality Commission. Health care for disabled children and young people: A review of how the health care needs of disabled children and young people are met by the commissioners and providers of health care in England. 2012. Available from: https://www.cqc.org.uk/sites/default/files/documents/health_care_for_disabled_children.pdf
Date this section was last reviewed[August 2019] (CP)