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KJSA logoChildren with Special Educational Needs or Disabilities (SEND)

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Why is this issue important?

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.

 

What do we mean by Special Educational Needs and Disabilities?

What does the local data tell us?

There are 66,329 school age children living in Kirklees, around 1 in 9 (12%) have some level of special educational need or disability (SEND). This equates to around 7,600 children locally.

Around 1 in 11 (9%) of all school age children have a SEND requiring Special Education Needs (SEN) support. This equates to around 5,800 children of whom there are slightly more of primary school age than secondary school age.

Currently there are 1,769 school age children (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 337 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.(2)

Communication needs

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 Severe Learning Difficulties (SLD) and Profound and Multiple Learning Difficulties (PMLD) groups.  Table 2 shows a breakdown of speech, language and communication needs by school population.

Learning disability

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 3,047 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 591 children with physical disabilities or sensory impairments; a breakdown is shown in table 4 below.

 

Cerebral Palsy

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. (4)

Long-term conditions

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

Asthma is a common childhood condition which affects almost 1 in 5 (18%) 14-year olds in Kirklees (5). 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. (6) 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.  (7)

Epilepsy

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 (8). In Kirklees this equates to approximately 279 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 4% over the next five years, this would equate to around 3,400 additional children. So the proportion of SEND children is likely to grow at least the same rate.

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 not have survived beyond the first few years of life. There is nothing to suggest that this trend will reduce.

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.

What significant factors are affecting this issue?

Infant mortality[1] 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 extended 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.(9)  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 2014 in Kirklees, the proportion of full term babies who had low birth weight was 3.7% (which is significantly higher than the rate for England 2.9%) and there are clear inequalities depending on area; in 2015/16 Dewsbury and Mirfield District Committee had the highest rate (4.5%) whereas Kirklees Rural had the lowest (2.7%).(10)

In 2015, Kirklees had a similar rate of stillbirth compared to nationally (3.2 compared to 4.4 per 1000 births).(24) The infant mortality rate in Kirklees (2013-2015) has dropped in recent years, but still remains above the England rate: 5.1 per 1000 births in Kirklees compared to an England rate of 3.9/1000.(21).  Again there are inequalities depending on area; the infant mortality rate was highest in Dewsbury and Mirfield (6.5/1000) and Batley and Spen (6.3/1000) and lowest in Kirklees Rural (1.9/1000). (11)

[1] Children dying before their first birthday

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 2014, the rate of under-18 conceptions was 27 per 1000 which is higher than the national average (23/1000). (12)

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.

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. (13)

Continence

Issues around continence affect a number of children; disabled children are much more likely than others to have continence problems. Around one in five disabled children have continence problems. This was more likely in those in the SLD and PMLD groups where double incontinence was 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. 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. 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.

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.

Behaviour

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. (14) An assessment of our local special school population found 10% of the special school population having challenge behaviour. This potentially presents greater issues for carers as the child grows up.

Attainment

Attainment amongst the SEND and EHC population is below national averages at every level. At foundation stage learning the local SEN support group trails about 6% behind national averages.  One in five of the SEN support population achieve a good level of development at level 2.

At Key Stage 2 local EHC children are around 4% behind national averages, girls tend to be slightly ahead of boys but still remain behind national averages. There are similar trends at GCSE level although performance has worsened in the last academic year after a period of stability. This might suggest a more complex group of students in the year group.

Free school meal eligibility

Nationally; pupils with Social, Emotional and Mental Health as their primary type of need are more likely to be eligible for free school meals than pupils with other primary type of need. One in three (33%) pupils with SEN support and two in five (42%) pupils with a statement or EHC plan with this type of need were eligible for free school meals. (3)

Housing

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. (15) 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. (16) 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

A recent review of the local special school population highlighted that around one in 10 (69 children) of the special school population require a wheelchair. Of these children a third of them required specialist moulded wheelchairs.

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 we have seen the costs of previously expensive technology coming down in price. We expect this 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 terms of the gender of disabled children three out of ten (29%) are female, seven in ten (71%) are male. (17)

White and Pakistani origin children have similar levels of SEN – 1.6% with EHC plans and 21-24% with SEN.  This contrasts with children of Indian ethnicity who have 1.1% with EHC plans and 14% with SEN. (17)

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.

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 to 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. (18)

Where is this causing greatest concern?

Disabled 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. 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 9.2 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.

What are the assets around the issue?

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. (20)

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.

Views of local people

My Journey: The day-to-day experiences of young people with SEND.

A recent piece of local research (21) 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 Children and Young Peoples Survey 2014

The last Children and Young Peoples Survey was conducted in 2014 (5) and included a sample of over 5000 students in years 7, 9 and 12 at mainstream schools across Kirklees.  The survey included questions around long term conditions and disabilities. From this we are able to understand how they perceive any disabilities they have and how they want to be supported to manage them. Overall one in 20 (5%) said they had a special educational need or a learning difficulty, of these one in six (15%) did not feel their school supported them enough. One in eight (12%) of all students had a health condition of disability that affects their everyday life. Of the 12% of students - half had asthma, a third had eczema, one in five had issues with short or long term pain, one in six had anxiety or depression issues and one in 16 had attention deficit related disorders. A small number reported having epilepsy or diabetes; however this increases when the special school population is taken into account.  Over half of this group felt they were able to manage their condition themselves, and two in three felt able to talk to professionals, parents and friends about their condition. Two in five felt that their condition or disability stopped them from doing the things they wanted to.

Parent and Carers interviews

As part of a series of interviews with families, the Care Quality Commission (22) 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.
  • Less 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?

  • Greater understanding of the needs of children aged 0-5 who are or might have a disability is a data gap locally and nationally.
  • There is a need to ensure we have a highly skilled workforce that is able to care for and support the most complex disabled children.
  • Ensuring people’s independence is promoted, encourage positive risk taking that will achieve better life outcomes.
  • Plans and strategies need to take account of transport and access to a broader range of support opportunities that are chosen and design 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 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.
  • The need to bring together key partners to work together in an ever closer and more joined up single approach to supporting children with a disability and their families through childhood into adulthood.
  • 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.
  • 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

Local authority interactive tool (LAIT)

  1. Langerman C, Worrall E. Ordinary Lives Disabled children and their families: A guide for donors and funders. 2005.
  2. The National Autistic Society. What is Autism? [Internet]. Available from: http://www.autism.org.uk/about/what-is/asd.aspx
  3. 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
  4. Kirklees Council. Neurological Conditions [Internet]. 2013. Available from: http://kjsa.kirklees.gov.uk/jsna/specific-conditions/neurological-conditions
  5. Kirklees Council. Children and Young People’s Survey. 2014.
  6. Asthma UK. Quit smoking to manage your asthma better [Internet]. Available from: https://www.asthma.org.uk/advice/manage-your-asthma/quit-smoking/
  7. Asthma UK. Asthma and pregnancy [Internet]. Available from: https://www.asthma.org.uk/advice/manage-your-asthma/pregnancy/
  8. Joint Epilepsy Council. Epilepsy prevalence , incidence and other statistics. Joint Epilepsy Council of the UK and Ireland. 2011.
  9. Public Health Wales. Low Birth Weight Review of risk factors. 2014.
  10. Kirklees Council. Low birth weight by District Committee. 2016.
  11. Office for National Statistics. Stillbirth- Local Authority [Internet]. 2015. Available from: https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/livebirths/datasets/birthsummarytables
  12. Office for National Statistics. Full teenage Conception Statistics [Internet]. 2014. Available from: https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/conceptionandfertilityrates/datasets/conceptionstatisticsenglandandwalesreferencetables
  13. Ramsbotham LR. The Links between Speech , Language and Communication Needs and Social Disadvantage [Internet]. 2013. Available from: https://www.rcslt.org/governments/docs/all_party_parliamentary_group_on_slcn_inquiry_report
  14. Contact a family. Health services for disabled children and young people Introduction [Internet]. 2015. Available from: https://www.cafamily.org.uk/media/625497/health_services_for_disabled_children_and_young_people.pdf
  15. Beresford B. The needs of disabled children and their families. [Internet]. Social Care Research. 1996. Available from: http://www.ncbi.nlm.nih.gov/pubmed/23122443
  16. Kirklees Council, NHS Greater Huddersfield CCG, NHS North Kirklees CCG. Current Living in Kirklees Survey. 2016.
  17. Department for Education. Special Educational Needs in England January 2016 [Internet]. 2016. Available from: https://www.gov.uk/government/statistics/special-educational-needs-in-england-january-2016
  18. 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]. BioMed Central; 2010 Apr 16 [cited 2017 Apr 21];10:21. Available from: http://www.ncbi.nlm.nih.gov/pubmed/20398346
  19. Kelly B, Dowling S, Winter K. Disabled Children and Young People who are Looked After: A Literature Review. Belfast; 2012.
  20. 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
  21. Kirklees Council. My Journey : The day-to-day experiences of young people with SEND [Internet]. 2016. Available from: https://kirkleesyc.org.uk/wp-content/uploads/2016/11/My-Journey-day-to-day-experiences-of-yp-with-SEND.pdf
  22. 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.

Date this section was last reviewed

26/05/17