New JSNA: This is the test site for the new Joint Strategic Needs Assessment

Disability & Special Education Needs Assessment 2016

Introduction

What is meant by Disability and Special Educational Needs (SEN)

There are multiple definitions of disability and SEN used by different organisation with no common definition existing across education, health, and social care organisation. Furthermore, different definitions are used at a service level within the same organisation. All definitions of disability will contain a variety of thresholds at which assessors determine that the restriction on the child or young person's individual involvement in life situations is sufficient enough to classify that child as disabled or as having special needs.

Below are some of the definitions of disability and SEN commonly used in education, health, and social care;

The Children and Families Act (Children and Families Act, 2014)

  1. A child or young person has special educational needs if he or she has a learning difficulty or disability which calls for special educational provision to be made for him or her.
  2. A child of compulsory school age or a young person has a learning difficulty or disability if he or she
    1. has a significantly greater difficulty in learning than the majority of others of the same age, or
    2. has a disability which prevents or hinders him or her from making use of facilities of a kind generally provided for others of the same age in mainstream schools or mainstream post-16 institutions.
  3. A child under compulsory school age has a learning difficulty or disability if he or she is likely to be within subsection (2) when of compulsory school age (or would be likely, if no special educational provision were made).
  4. A child or young person does not have a learning difficulty or disability solely because the language (or form of language) in which he or she is or will be taught is different from a language (or form of language) which is or has been spoken at home.

The Equality Act (The Equality Act, 2010)

  1. A person (P) has a disability if—
    1. P has a physical or mental impairment, and
    2. the impairment has a substantial and long-term adverse effect on P's ability to carry out normal day-to-day activities.
  2. A reference to a disabled person is a reference to a person who has a disability.
  3. In relation to the protected characteristic of disability—
    1. a reference to a person who has a particular protected characteristic is a reference to a person who has a particular disability;
    2. a reference to persons who share a protected characteristic is a reference to persons who have the same disability.
  4. This Act (except Part 12 and section 190) applies in relation to a person who has had a disability as it applies in relation to a person who has the disability; accordingly (except in that Part and that section)
    1. a reference (however expressed) to a person who has a disability includes a reference to a person who has had the disability, and
    2. a reference (however expressed) to a person who does not have a disability includes a reference to a person who has not had the disability.
  5. A Minister of the Crown may issue guidance about matters to be taken into account in deciding any question for the purposes of subsection (1).
  6. Schedule 1 (disability: supplementary provision) has effect.

The Children's Act (Children Act, 2004)

A child is disabled if he is blind, deaf, or dumb, or suffers from a mental disorder of any kind, or is substantially and permanently handicapped by illness, injury, or congenital deformity or such disability as may be prescribed.

Definition of Disability (World Health Organisation, 2013)

Disability is an umbrella term covering impairments, activity limitations, and participation restrictions:

  • An impairment is a problem in body function or structure
  • An activity limitation is a difficulty encountered by an individual in executing a task or action
  • A participation restriction is a problem experience by an individual in involvement in life situations

Figure 1: relationship between special educational needs and disability
Figure 1: relationship between special educational needs and disability

Figure 1 above illustrates the often overlapping relationship between SEN and disability. Many children and young people who have SEN may have a disability under the Equality Act 2010 which includes long-term health conditions such as asthma, diabetes, epilepsy, and cancer. Children and young people with such conditions do not necessarily have SEN, but there is a significant overlap between disabled children and young people and those with SEN. Where a disabled child or young person requires special educational provision they will also be covered by the SEN definition (Department for Education and Department of Health, 2015).

Aims of needs assessment

The local Joint Strategic Needs Assessment (JSNA) highlighted a need for robust and comprehensive analysis of disability and special educational needs in Reading. It was therefore decided by local commissioners in the local authority and the NHS to undertake a comprehensive needs assessment of disability and SEN for ages 0 to 25 years to inform future commissioning under the SEND reforms.

The assessment aims to look at the available data and information about children with disabilities across Reading from local authority, education, and health data sources. In order to assess future need and provision the assessment considers trends in current prevalence and local demographics as well as the trends in the health and social determinants of disability and SEN. It combines this with nationally published statistics, research, policies, and strategies in order to develop a shared understanding of current and future need and priorities for children and young people with disabilities and SEN across health, education, and social care in Reading.

National picture of disability and SEN services

 


 

Key changes to disability and SEN from Sep 2014

Covers children and young people from birth to the age 25

Focus on including children, young people, and their parents in decision making

Focus on high aspiration and an improvement of outcomes for children and young people

Focus on supporting children and young people to succeed in their education and make a successful transition to adulthood

Focus on the strengthening of joint planning and commissioning between education, health, and social care

The replacement of Statements of SEN/Learning Difficulty Assessments (LDAs) with Education Health and Care (EHC) plans

The need to provide and publish a local offer of services for children and young people with disability and SEND


 

The Children and Families Act (Children and Families Act, 2014) legislation which came into affect from the 1st September 2014 represented a change in how disability and SEN services will be defined and provided. This was followed by a new code of practice published in January 2015 (Department for Education and Department of Health, 2015) which give statutory guidance on the duties, policies and procedures relating to the new Act. This code of practice draws on the experience of pathfinder local authorities who have piloted new approaches within their communities (Department for Education, 2014). The key changes brought about by the Act and the Code of Practice can be seen in the box.

The Code of Practice also supplies new guidance on; publishing and local offer of support, identifying and supporting student with SEN through a graduated approach in education and training settings; supporting children in who are in Youth Custody.

By 1st April 2018, local authorities must have transferred all children and young people with SEN statements to the new system. To support the transition from the previous system to the new system a phased approach has been developed. It is important to note with regards to the changes from SEN Statements/LDAs to EHC plans that the legal test of eligibility remains the same and it is expected that all children and young people who, under the previous system, would continue to have a statement/LDA will be transferred to an EHC plan.

Personal Budgets are an amount of money provided by the Local Authority to deliver the provision outlined in the individual EHC plan. There are three mechanisms for the delivery of a Personal Budget:

  1. Direct payments where the individual receives the cash to contract, purchase and manage services themselves
  2. An arrangement whereby the local authority, school or college and the funds and commission the support specified in the plan
  3. Third party arrangement where funds are paid to and managed by an individual organisation on behalf of the child's parent or the young person

Determinants of disability and SEN

The main known determinants of disability and SEN can be split into two categories of health determinants and social determinants.

Health determinants of disability and SEN

Prenatal and birth
Infectious diseases

There are some infections that are known to cause problems during pregnancy and, although the chance of the mother catching these infections and/or the infections been passed to the unborn baby and causing problems are low, they can have some serious implications to maternal and child health (NHS Choices, 2015).

Chickenpox in pregnancy can risk the unborn baby developing foetal varicella syndrome (FVS). This can cause eye defects, shortened limbs, and brain damage to the baby. Cytomegalovirus (CMV) is a common virus in young children which can be caught during pregnancy via the spread of saliva and cause problems in unborn babies including hearing loss, loss of vision, learning disabilities and epilepsy. Developing rubella (German measles) in the first four moths of pregnancy can lead to birth defects and miscarriage. Toxoplasmosis can be caught by coming into contact with cat faeces or by eating foods contaminated by the toxoplasmosis-causing parasite. If passed to the baby, toxoplasmosis can in some cases lead to problems with vision and brain damage. Viruses such as HIV, Hepatitis B and syphilis can be passed on from an infected mother to their baby leading to acute and chronic ill health.

Smoking during pregnancy

The risks to the unborn baby of been exposed to smoke either directly from the mother smoking or the mother been exposed to second-hand smoke in the home have been well documented. The chemicals contained within the smoke are passed across the placenta to the baby. Nicotine also reduces blood flow to the placenta meaning that the baby may not grow as well as would normally be expected. Health problems identified as being associated with smoking during pregnancy include;

  • Complications during labour
  • Increased risk of miscarriage
  • Premature birth
  • Still birth
  • Low-birth wright
  • Sudden-unexpected-death in infancy
  • Increase infant mortality risk (estimated at 40%)
  • Respiratory tract infections in infancy
  • Asthma in infancy
  • Ear, nose and through problems in infancy
  • Psychological problems in childhood

(NICE, 2010)

Drug and alcohol use during pregnancy

The UK Chief Medical Officer proposed new alcohol guidelines which include guidelines on alcohol consumption during pregnancy (Department of Health, 2016). A summary of these recommendations can be seen in the box. These recommendations are based on a review of a large amount of evidence about the levels and types of health harms that alcohol can cause depending on how much and how often people drink.


Proposed new guidance on pregnancy and drinking

Women who are pregnant or trying to conceive should not drink alcohol at all

Drinking in pregnancy can lead to long-term harm to the baby with the risk increasing with the amount of alcohol being drunk

Risks are likely to be low if a woman has drunk only a small amount of alcohol during pregnancy: this may be before she knew she was pregnant

Women who find out they are pregnant after having drunk more than a small amount during early pregnancy, should avoid further drinking and be aware that it is unlikely in most cases that the baby will have been affected

Women who are concerned about how much they have been drinking whilst pregnant should talk to their doctor or midwife


There is compelling evidence that drinking heavily during pregnancy can cause and serious condition called foetal alcohol syndrome (FAS) which results in restricted growth, facial abnormalities, and learning and behavioural disorders. There is also evidence that drinking regularly or periods of heavier (binge) drinking can lead to a group of conditions which present as milder forms of FAS. Mothers drinking 1-2 units of alcohol a day are likelier to have babies with a low birth weight, babies born early, and small for gestational age babies than mothers who do not drink at all. As the evidence around drinking at low levels is complex with no robust evidence for its safety currently available the guidance takes a 'precautionary' stance in recommending that women who are pregnant or planning a pregnancy should not drink alcohol at all.

Maternal substance misuse is known to affect the pregnancy and to have detrimental outcomes for the child. The substance a pregnant mother is misusing will be passed to the baby via the placenta and this exposure can affect the unborn baby in a number of ways depending on the substance been used, the frequency and quantity being use, and the stage of foetal development. Affects will likely be confounded by maternal infection, and poor maternal health and nutrition. As well as the direct effect of the exposure to the substance via the placenta on the unborn baby, maternal drug use can affect the parenting capacity of the mother and expose the child the risky environmental factors such as crime and poverty (Day & Sanju, 2005).

Maternal diet

Maternal diet plays and key role in a babies development beginning with the diet the mother consumes whilst she is planning to become pregnant. There are elements of a mother's diet which can offer benefits to the unborn child such as the use of certain supplements including vitamin D (NICE, 2014) and folic acid. Folic acid supplements reduce the risk of neural tube defects such as spina bifida (NICE, 2008) in which the spine does not develop properly leading to weakness or paralysis of the legs and incontinence.

A lack of vitamin D during pregnancy is associated with a lack of vitamin D in the baby which can lead to hypocalcaemic seizures, and impaired growth and bone development. There is also some emerging evidence of an association between maternal vitamin D levels and foetal lung development and childhood immune disorders (Royal College of Abstetrician and Gynaecologists, 2014).

There are other elements of a mother's diet which can have a negative effect on child development meaning that there are certain foods that women are advised to avoid or limit during pregnancy (NHS Choices, 2015). Obesity during pregnancy can increase the risk of a number of complications for the mother including gestational diabetes, pre-eclampsia, and miscarriage. Babies born to obese mothers also face higher risk of foetal death, still birth, congenital abnormality, being large for gestational age, and being obese themselves in childhood and adulthood (NICE, 2010).

Maternal age

Both younger and older mothers are more likely to have babies who are born early and/or have a low birth weight. Younger mothers are more likely to engage in the behaviours described above that can be detrimental to theirs and their babies health such as smoking during pregnancy and are less likely to engage in the behaviours that have a positive effect on theirs and their babies health such as taking dietary supplements. They are also more likely to access antenatal services later on in pregnancy (Public Health England, Various). Older women are more prone to complications during pregnancy and delivery such as gestational diabetes, breech presentation, and delivery by caesarean section (Jolly, Sebire, Harris, Robinson, & Regan, 2000). Children born to older women are also more prone to chromosomal abnormalities such as Downs Syndrome (NHS Choices, 2015).

Genetic conditions

A number of conditions associated with disability and SEN have a genetic cause: they are caused by a change in a person's sequence of DNA that is present in an individual at birth (congenital conditions). Some of these are caused by genes that are carried by a child's parents who may or may not be affected and are inherited by the child such as Sickle cell disease. Others occur when a genetic mutation occurs in a non-affected parent's egg or sperm such as in the majority of cases of Downs Syndrome. Genetic conditions are more likely to occur in children whose parents are in inter-family relationships such as relationships between first cousins. Inter-family relationships are known to be more prevalent amongst people of South Asian and Middle Eastern heritage. Genetic mutations are also more common in children of older mother's and those who are exposed to certain environmental risk factors.

Low birth weight and preterm birth

A number of the determinants outlined above have been described as leading to outcomes of babies being born with a low birth weight and/or being born early. These can be seen as short-term outcomes which in themselves can result in longer-term outcomes.

Being born prematurely increases a baby's chance of having cognitive and neuro-motor impairment (Larroque, Ancel, & Marret, 2008); sight (Quiram & Capone, 2007) and hearing (Jiang, Brosi, & Wilkinson, 2001) problems; and behavioural and psychomotor problems (Founder-Hughes & Cooke, 2003). The level of risk associated with these outcomes will vary greatly depending on how early the baby was born.

The majority of children with a low birth weight will have normal outcomes. However, a low birth weight increased the chance of illness and neuro-developmental problems which increase as the birth weight decreases. Problems tend to relate to mild problems in cognition, attention, and neuro-motor functioning with long-term studies indicating that these affects remain apparent in adolescence (Hack, Klein, & Taylor, 1995).

Injuries during birth

In extremely rare cases a child can suffer brain damage at birth resulting from a lack of oxygen which can result in disabling conditions such as cerebral palsy. This can also occur in babies who are born prematurely where there is an increased risk that the baby will develop bleeding in or around the brain (NHS Choices, 2015).

Access to antenatal care

Given the strong association between maternal health and care and child development all women should access maternity services for a full health and social care assessment of needs, risks and choices by 12 week and 6 days of pregnancy. This is to ensure personalised maternity care that will improve outcomes for mothers and babies.

Starting on the antenatal care pathway (NICE) early in pregnancy will ensure that the mother is offered all of the elements of the NHS antenatal screening programme within the optimum timescales. This allows for earlier, more affective treatment, and provides the mother and her family with the opportunity to make informed decisions about her own and her baby's health (Public Health England, 2016). For example, treatment of maternal HIV infection in pregnancy reduces the of the HIV infection being pass from mother to child from 1 in 4 to less than 1 in 200. The antenatal care pathway also provides the mother with access to a range of advice around having a healthy pregnancy which will support the growth and development of her baby. For example, taking 400 micrograms of folic acid each day from before pregnancy until the 13th week of pregnancy has been shown to reduce the risk of the baby having a neural tube defect (NICE, 2008).

Postnatal
Infectious diseases in infancy

Worldwide, infections are among the leading cause of chronic, developmental disabilities in children. The wide availability of vaccinations to protect children against infectious disease in developed countries has greatly reduced the levels of disease, disability and death associated with illnesses such as meningitis and measles. However, cases of infectious disease that can lead to childhood disability still occur in children who have not been vaccinated.

In the UK measles causes moderate to severe complications in around 1 in every 15 children with the virus. Amongst these, 1 in every 1,000 to 2,000 cases of measles results in encephalitis which can lead to permanent brain damage (Oxford Vaccine Group, 2016). Meningitis is cased by viral or bacterial infections with a number of vaccinations available which provide protection against many meningitis-causing bacterial infections. Children who develop bacterial meningitis can in some cases be left with serious long-term health problems including; hearing or vision loss; problems with memory and concentration; epilepsy; co-ordination, movement and balance problems; and loss of limbs (NHS Choices, 2016).

Injuries to children and young people

Unintentional injury is a leading cause of death among children and young people age 1 to 14 in England and Wales. Unintentional injury can affect and child or young person's social and emotional wellbeing with some consequences been long-term disability (NICE, 2010).

Social determinants of disability and SEN

Age

There is a lower prevalence of disability in younger children. This could be in part to the later manifestation of a range of conditions with some conditions becoming more activity limiting as the child gets older (Blackburn, Spencer, & Read, 2010). It is also likely due to the high reliance on school Special Educational Needs (SEN) data as an estimate of childhood disability prevalence.

Gender

Most surveys show that proportionately more boys than girls have long-standing illness or disability (Association for Young People's Health, 2015). Boys are two and a half times more likely to have statements of SEN at primary schools and nearly three times more likely to have statements at secondary schools compared to girls (Department for Education, 2014).

Ethnicity

There is some research to suggest that there are a slightly lower percentage of White disabled children than might be expected, and a higher percentage of minority ethnic groups (Thomas Conran Research Unit, 2008). However, poverty and social disadvantage appear to be a mediating factor in this relationship (Lombard, 2009).

Gypsy, Roma and Traveller (GRT) children are more likely to be identified as having SEN than their peers and have the highest level of SEN than all ethnic minority groups. This may be a result of families lacking information or experiencing problems accessing appropriate healthcare (Department for Education, 2010).

Low income and poverty

There is clear evidence that children with disabilities a more likely to live in families with low incomes with households of disabled children from minority ethnic groups having particularly low median incomes (Blackburn, Spencer, & Read, 2010). Though, as the authors of this particular research highlight, this does not imply a single-direction causal relationship between low income and disability. There is no conclusive evidence to indicate whether or not low income results directly in disability or whether disability results directly in low income. Furthermore, it is likely that there are multiple mediating factors influencing this observed relationship. What is clear is that children with disabilities and their families continue to face inequality and material disadvantage.

Children who have suffered abuse or neglect

Children who have suffered for abuse or neglect can often develop significant behavioural and emotional problems which persist long after they have been taken away from the abusive or neglectful environment (Amaya-Jackson, 2008). Long-term effects of abuse and neglect include emotional difficulties, mental health problems, poor physical health, behavioural problems, and learning difficulties and lower educational attainment (NSPCC). Neglect is particularly damaging in the first two to three years of life but can compromise development throughout childhood and adolescence and the longer that neglect continues, the worse the outcomes for the child. Children who have suffered from neglect show more evidence of delayed cognitive development, poor language skills, poor social skills, and poor coping abilities than children who have suffered other forms of mistreatment (Department for Education, 2014).

Looked after children

There is a higher prevalence of SEN amongst looked after children in comparison to their peers with most common type of SEN is behaviour, emotional and social difficulties (Department for Education, 2015). Four factors have been described as affecting the mental health of looked after children (Bazalgette, Rahilly, & Trevelyan, 2015). These are;

  1. Brain development: studies have shown both structural and functional difference in the brains of those who have suffered maltreatment
  2. Physiology: prolonged expose to stress can lead to a child having either chronically elevated or suppressed stress system leading to anxiety or aggressive behaviour respectively
  3. Genes: there is some evidence that early maltreatment can switch on genes that are associated with anti-social behaviour
  4. Differential susceptibility: describes how some children are more easily influenced by their environment than others

Inequalities for children and young people with disabilities and SEN

Physical health

A report by Public Health England determined that children and young people with learning disabilities are at an increased risk of exposure to the social determinants of poor mental and physical health such as poverty, poor housing, and a reduced social network (Public Health England, 2015). The report also found that children with learning disabilities are significantly less likely than their peers to be breast fed; significantly more likely to be exposed to tobacco smoke. They are also less likely to have access to timely, effective and appropriate healthcare. This leads to children with disabilities becoming more vulnerable to secondary health conditions which are less well managed and treated.

Emotional health and wellbeing

Although there is a large amount of evidence showing the strong relationship between physical and mental health, the nature and direction of the relationship is not always easy to define. Sometimes poor physical health leads to poor mental health and vice versa. Other times it is a single common factor leading to both poor mental health and poor physical health outcomes. Often the interplay between mental and physical health is complex.

Children with a long term physical health problems are twice a likely to suffer from emotional problems and disrupted behaviours especially if the brain is affected by their physical health problem (Royal College of Psychiatrists, 2012). Children with learning disabilities are: less likely to have a close relationship with their mother; more likely to be exposed to inconsistent and harsh parenting and more chaotic family environments; more likely to be exposed to a greater number and wider range of potentially adverse life events; more likely to have few friends, smaller social networks and receive less social support (Public Health England, 2015) .

A 2007 study (Emerson & Hatton, 2007) found that 39% of 5 to 15 years olds with a learning disability have a diagnosable mental health problems compared to 8% of children who did not have a learning disability. They are also significantly more likely to have multiple disorders.

Specifically children with learning disabilities are:

  • 33 times more likely to have an autistic spectrum disorder
  • 8 times more likely to have ADHD
  • 6 times more likely to have a conduct disorder
  • 4 times more likely to have an emotional disorder
  • 1.7 times more likely to have a depressive disorder

The study concluded that children with learning disabilities do not have an increased risk of mental health problems as a direct result of their disability but because of their increased chances of being exposed to poverty, social exclusion and more challenging family environments.

The study also looked at the services and support received by children with learning disabilities and their carers. It found that:

  • Just 28% of carers sought advice from family and friend about their child's emotional or behavioural difficulties
  • 56% reported receiving helpful support from services (75% received any support)
  • There was no evidence that children with learning disabilities had less access to sources of support than children without learning disabilities.

The gaps in support for children with learning disabilities and/or autism who have a mental health problem have recently been highlighted (Local Government Association and NHS England, 2015) as being:

  • Mental health problems are not being picked up or treated at an early stage in the community
  • Poor care services and support packages lead to behaviours that can challenge services leading to placement breakdown or families who are unable to cope
  • Evidence based interventions are not made available to minimise risky behaviour from a young age
  • Young people going undiagnosed and struggling to access mainstream services

Too many people been in hospital for many years

Lifestyle behaviours

Measuring smoking rates, and alcohol and drug use is difficult as we are mainly reliant on self-report surveys based on a small sample of the population. There is a possibility that young people with disabilities may be exposed to alcohol and illegal drugs due to a number of factors namely: isolation, social pressure, mental health problems, poverty, communication difficulties and a lack of accessible information, and self-medication (Beddoes & Sheikh, 2010). Similarly, given the association between smoking and low income (Office for National Statistics, 2014) and between disability and low income (Blackburn, Spencer, & Read, 2010), young people with disability may be more likely to smoke than their peers.

Data has shown and relationship between adult disability and obesity. This relationship will vary depending on the level and type of disability as well as by age and sex (Public Health England, 2013). Children with a limiting illness or disability have also been found to be at an increased risk of being obese or overweight particularly if they also have a learning disability (Child and Maternal Health Observatory, 2011).

The annual active people survey for those aged 16 years and over found sports participation to be significantly lower amongst people with disabilities than non-disabled people across all ages: 8% of disabled people exercise three times or more a week compared to 20% of non-disabled people (Sport England, 2015).

Childcare

The availability of appropriate childcare options for children with disabilities is limited which often means that parents are forced out of work in order to look after their child. 25% of parents with disabled children are not accessing the free childcare offer with the reasons cited being, the provision cannot look after children safely; the staff are not properly trained; the provision is not inclusive. 25% of parents report being refused a place because of their child's disability or SEN. Reasons that early years setting report for refusing a child a place include: the setting cannot meet the child's additional needs; the child needs one to one care which is not affordable; the setting cannot manage the child's behaviour (Council for disabled children, 2015).

Play opportunities

There is much evidence around the benefit of play on a child's development particularly for children with disabilities and SEN with play often been used as a form of early intervention. Despite this, young children with disabilities are facing barriers to play opportunities in their local areas. Many parents of children with multiple needs are facing multiple barrier to accessing play settings including a lack of specialist support, additional costs, and their children being intentionally excluded (Sense, 2016).

Education, employment and training

28% of young people aged 19 years who have a disability are not in education, employment, and training (NEET) compared to 13% of 19 year olds who do not have a disability. 48% of 19 years olds with a disability have been NEET at some stage with 24% having been NEET at some stage for over a year (Delebarre, 2016). An analysis of the 2014 national SEN data (Department for Education, 2014) found that pupils with SEN were much more likely to be excluded or to be absent from school and their attainment at school was lower than their peers with there having been no reduction in this gap. Pupils with SEN who were also eligible for free school meals had lower attainment levels than pupils with SEN who were not eligible for free school meals and than children without SEN who were eligible for free school meals. 82% of pupils with a statement of SEN in 2014 went onto Further Education or training compared to 76% of pupils with SEN without statements and 89% of those without SEN. 52% of pupils with SEN in schools progressed to Higher Education compared to 63% of those without SEN.

Low income and poverty

Children and young people with disabilities and their families continue to face inequality and material disadvantage. There is clear evidence that children with disabilities a more likely to live in families with low incomes with households of disabled children from minority ethnic groups having particularly low median incomes (Blackburn, Spencer, & Read, 2010). In 2014 with SEN were twice as likely to be in receipt of free school meals as children without SEN (Department for Education, 2014). Children and young people with learning disabilities are more likely to live in rented housing, overcrowded hosing, housing that is in a poor state of repair, and housing that is too cold in winter (Public Health England, 2015).

Youth offending

The Ministry of Justice: Transforming Youth Custody consultation (Ministry of Justice, 2013) reported that 18% of young people in custody who had received a sentence had a statement of SEN compared to 3% of the general population. It also reported evidence suggesting that the prevalence of neuro-development disorders among young people who are in custody is higher than the prevalence in the general population. Finally, it reported that over 60% of young people in the youth justice system have problems with speech, language or communication.

Abuse and neglect including sexual exploitation

Children and you people with disabilities are at a greater risk of all types of abuse including neglect than non-disabled children and young people. Research reported by the NSPCC suggests that children with behavioural problems are at the greatest risk of abuse (NSPCC, 2014). The same report highlighted evidence that boys with disabilities are at a greater risk of abuse than girls with disabilities and that children in residential care face particular risks. Children and young people with learning disabilities are at an increase risk of exposure to violence including bullying, physical, sexual, and emotional abuse (Public Health England, 2015). A report by Barnardos reveals that children and young people with learning disabilities are more vulnerable to child sexual exploitation than other children and that they are also facing additional barriers to protection and support (Franklin, Raws, & Smeaton, 2015).

Facts, figures and trends (0-25)

Population overview

Population aged 0 to 25 - Reading

The 0 to 25 year old population of Reading can be seen in the table below projected over the next ten years (figures are in thousands). This is shown by age band and by gender. The total population aged 0 to 25 in 2016 is 55,300 and is predicted to increase by 3% to 57,100 by 2025. This increase is driven by large percentage increases in the 10 to 19 year old population with the population size of the younger and the oldest age groups expected to see some decrease in size.

GenderAge Group2016201720182019201020212022202320242025% change 2016 to 2025
Male0-46.26.1665.95.95.85.85.75.7-8%
5-95.55.65.65.65.65.65.55.55.45.4-2%
10-144.24.44.64.84.95.15.25.25.25.224%
15-194.64.54.54.54.64.74.95.15.35.520%
20-247.37.47.47.37.37.27777.1-3%
0-2427.82828.128.228.328.528.428.628.628.94%
Female0-45.95.85.75.75.65.55.55.45.45.4-8%
5-95.25.35.35.35.35.25.15.155-4%
10-1444.24.44.64.84.94.94.94.94.923%
15-194.84.74.74.64.64.855.25.35.515%
20-247.67.67.77.67.67.57.37.37.37.4-3%
0-2427.527.627.827.827.927.927.827.927.928.23%
All0-2455.355.655.95656.256.456.256.556.557.13%

​Source: Office for National Statistics

Population structure - Reading

The structure of Reading's population can be seen below. It can be seen that the percentage of the population who are aged 0 to 9 old is notably larger than the England average for this age group. The percentage of the population aged 20 to 24 is also significantly larger than the England average.

Figure 2: Population pyramid of Reading with England comparator
Figure 2: Population pyramid of Reading with England comparator

Source: Office for National Statistics

Child health profile - Reading

Public Health England has developed a Children and Young People's Health Benchmarking Tool which can be accessed at http://fingertips.phe.org.uk/profile/cyphof. The tool uses and builds upon data from both the Public Health and NHS outcomes Frameworks in order to allow local areas to measure the health and wellbeing of local children against national or regional averages.

The health and wellbeing of children in Reading is generally comparable to the national average as measured across a range of key indicators. It is also comparable to the health and wellbeing of children living in local authorities experiencing similar levels of deprivation (Reading is in the fifth least deprived decile nationally). However, there are some notable exceptions. Areas where children in Reading are experiencing worse outcomes are centred on life expectancy at birth for males; school readiness; young people not in education, employment, or training; and coverage of childhood vaccination.

It should be noted that these local authority level profiles will mask some significant variation and inequalities across different sub-groups of the population such as those living in areas of higher relative deprivation, and people from minority ethnic groups. Furthermore, we know that children and young people with disabilities risk poorer outcomes than the general population which will not be reflected in these figures.

Determinants of disability and SEN

The table below summaries local data related to the determinants of disability and SEN that were outlined previously. Trends are give where possible and the table to colour coded to indicate significant differences when compare to the England average.

Table 2: Determinants of disability and SEN - Reading
Table 2: Determinants of disability and SEN - Reading

Table 2: Determinants of disability and SEN - Reading (2)
Table 2: Determinants of disability and SEN - Reading (2)

Key to table
Key to table

Where comparisons can be made to England averages, it can be seen that Reading has a lower prevalence of the some of the major risk factors identified here as been related to disability and SEN. The exception to this being: births to older mothers; children living in poverty; children looked after due to abuse or neglect; and the rate of maternal rubella susceptibility: this means that a pregnant woman does not have the necessary antibodies in her blood to fight rubella (German measles). This will because she has not received a course of the rubella vaccination (part of the MMR vaccine).The MMR vaccination cannot be given in pregnancy so women need to be vaccinated prior to conception. Trends in some of the key risk factors are going in the right direction including maternal infectious disease; the prevalence of congenital abnormalities; dependent children living in poverty; and the rate of children being looked after. However, the number of children being looked after due to reasons of abuse or neglect is increasing over time.

Prevalence of disability and SEN

The World Health Organization (WHO) estimates that 5.1% of children worldwide have a disability with 0.7% having a severe disability (WHO, 2008).

There is currently no universal system within the health and social care sector which records the number of children and young people with disabilities making it difficult to understand the overall level of local need and prevalence in terms of different types of disability and severity. A recent development which will help to overcome this gap in local knowledge is the development and implementation of the national Maternity and Children's Dataset (The Health and Social Care Information Centre). The aim of the dataset is to "improve clinical quality and service efficiency; and to commission services in a way that improves health and reduces inequalities". Providers have begun submitting data to the dataset though it may be some time until the data is fully available for use by commissioners.

Estimated prevalence of disability and SEN - Reading

A Needs Assessment report conducted by the National Child and Maternal Health Intelligence Network states:

"The number of disabled children in England is estimated to be between 288,000 and 513,000 by the Thomas Coram Research Unit (TCRU). The mean percentage of disabled children in English local authorities has been estimated to be between 3.0 percent and 5.4 percent, through a survey of all Directors of Children's Services in England undertaken by the TCRU. If applied to the population of Reading this would equate to between 968 and 1,742 children experiencing some form of disability." http://atlas.chimat.org.uk/IAS/profiles/profile?profileId=46&geoTypeId=

The table below shows the results of studies into the prevalence of disability in children and young people by diagnosis. Local population estimates for children and young people age 0-24 have been applied to these estimates in order to show the expected number of children and young people with disabilities in the local area by diagnosis.

Table 3: Estimated prevalence of disability by diagnosis - Reading
Table 3: Estimated prevalence of disability by diagnosis - Reading

(Blackburn, Spencer, & Read, 2010)

There is some discrepancy in the total number of children and young people estimated to have a disability in the table above compare to that estimate by the National Health and Maternal Health Intelligence Network. The reasons for this discrepancy will include;

SEN&D prevalence in schools

Special Educational Needs data is often used as a proxy measure for overall disability prevalence amongst children and young people. The main collection of the school Census conducted in January each year in the widest and most comprehensive count of children with SEN&D.

There are different categories of SEN&D within the education system which drive the categories included in the data collection. These are shown in the diagram below. The changes made in the SEN&D system has meant changes to how the data that is collected is categorised. This will have some implications in using the data to monitor trends which compare the data collected prior to September 2014 with the data collected under the current system.

A child may have a SEN or disability which can be supported adequately within existing school resources (SEN support). Where this is not possible then the Local Authority is able to assess the child to develop EHC plan and will make provisions for additional resources to be made available to the school in order to meet the child's needs. Therefore, having a statement (under the old system) or an EHC plan (under the current system) identifies children who have the highest levels of need.

Figure 3: Categories of Special Educational Needs and Disability
Figure 3: Categories of Special Educational Needs and Disability

A child assessed as having SEN&D will be assessed as having one of the following types of SEN&D under the current SEN&D system. These are divided into four main areas:

Figure 4: Special Educational Needs and Disability types
Figure 4: Special Educational Needs and Disability types

SEN&D prevalence in schools - Reading

The data below shows the number of children in all Reading schools who have SEN with a statement/EHC plan. The percentage of children with an EHC plan in 2015 was 2.7% which is similar to national and regional averages. The percentage of children with statements/EHC plans has remained fairly consistent in recent years after an increase in 2010.

Table 4: Pupils with statements of SEN and EHC plans  - all schools
Table 4: Pupils with statements of SEN and EHC plans - all schools

Table 4: Pupils with statements of SEN and EHC plans  - all schools (2)
Table 4: Pupils with statements of SEN and EHC plans - all schools (2)

Source: Department for Education

The data below shows the number of children in all Reading schools who have SEN support without a statement/EHC plan. The percentage of children with SEN support in 2015 was 13.2% which is marginally higher than national and regional averages. The percentage of children with SEN support has decreased over time.

Table 5: Pupils with SEN support - all schools
Table 5: Pupils with SEN support - all schools

Table 5: Pupils with SEN support - all schools (2)
Table 5: Pupils with SEN support - all schools (2)

Source: Department for Education

The two most common categories of need for children with SEN in Reading are: social, emotional, and mental health; and speech, language and communication needs with the proportion of children with SEN in Reading with these primary needs being much higher than the England averages. Amongst other categories of need, a larger proportion of children with SEN in Reading have a primary need of an ASD than the England average.

Table 6: Pupils with SEN support by category of need
Table 6: Pupils with SEN support by category of need

Table 6: Pupils with SEN support by category of need (2)
Table 6: Pupils with SEN support by category of need (2)

Source: Department for Education

Children with long term health problems

Children with long term health problems - Reading

The table below shows the number of live births where the baby is affected by a congenital problem that will impact their health. It shows conditions affecting the heart, the respiratory system, the digestive system, and the urinary system. These conditions will have a broad range of short and long term effects on the life of the child and their families with some being relatively minor problems that can be corrected during infancy. Others will require long-term medical intervention and may result in a shortened life-span for the child. Numbers of babies affected by these conditions are low with heart defects been by far the most common congenital abnormality. The pattern of occurrence of these conditions has been one of some decrease followed by an increase in more recent years. This is likely representative of improvements in pre-natal diagnosis and advancements in neonatal and paediatric care which mean that the predicted outcomes for these children are much more positive than they once were.

Table 7: Congenital anomalies per 10,000 live births 1992 to 2012
Table 7: Congenital anomalies per 10,000 live births 1992 to 2012

Source: Eurocat Network

There is no single data source which can be easily accessed to show us the overall local prevalence of long term health conditions such as asthma, diabetes and epilepsy in children and young people. One place we can look for an indication of these numbers is at hospital admission data. This will not show us the total prevalence rate as we are only seeing those children who require emergency secondary care for the condition and is only a proxy measure used to compare local rates with those experienced nationally. There are around 200 per 100,000 children and young people under the age of 19 from North and West Reading CCG and 300 per 100,000 children from South Reading admitted to hospital for these conditions. This is a lower rate than the national average in the case of North and West Reading CCG and a comparable rate to the national average in the case of South Reading CCG. This reveals that either the prevalence of these conditions is lower in North and West Reading CCG or that the conditions are been better managed in the community and require less emergency intervention.

Figure 5: Emergency admissions for diabetes, epilepsy, or asthma
Figure 5: Emergency admissions for diabetes, epilepsy, or asthma

Figure 5: Emergency admissions for diabetes, epilepsy, or asthma (2)
Figure 5: Emergency admissions for diabetes, epilepsy, or asthma (2)

Source: Public Health England

Current service provision

To ensure that children and young people with disabilities and SEN are able to reach their potential it is important that there is a provision of effective care and support provided at the appropriate stages of their life. This support comes from different agencies; health, education, social, and voluntary services. Some individuals will require low levels of support whilst others will require high levels of multiagency support across health, social services and education. Local education, social care, voluntary and health services which support children and young people with disabilities are mapped out below alongside figures of the number of children and young people supported by these services. We need to remain mindful of the fact that children and young people will often be seen by more than one agency/service and will be counted more than once within the data.

Education services

Early years support
  • Early Years Settings
  • Children's Centres
  • Pre School Teacher Counsellor Service / Portage or equivalent
Mainstream Schools
  • Mainstream schools
  • Mainstream schools with resourced units
Special Schools
  • Maintained special school placements
  • Other special school placements
  • PRUs, Home Education and other Alternative Provision
  • Special School Outreach Service (if one exists in your area)
  • Special school family support workers (if appropriate)

The table below looks at the type of establishment which pupils with SEN&D in Reading schools were placed in as of January 2015. Placements for pupils with SEN support and for children with SEN who have a statement/EHC plan are shown separately.

Table 8: SEN&D pupils by establishment type January 2015
Table 8: SEN&D pupils by establishment type January 2015

Source: Department for Education
Specialist education services
  • ASD Service
  • Sensory service
  • Education Psychology Service
  • Behaviour Support Team (if it exists in your area)
  • SEN Support Team / Cognition and Learning Team (if one exists in your area)
  • Language and Literacy Centres or equivalent (if these exist in your area)
    Further/higher education
  • General FE College placements
  • Independent Specialist FE College placements
  • Supported Employment Service (if it exists in your area / is commissioned by Education)
  • Supported Internships (e.g. Project Search)
    Transport
  • SEN Home to School Transport
  • Independent Travel Training (if it exists in your area)
    Information and advice
  • SEND Information, Advice and Support Service (SENDIASS)
  • Mediation and Disagreement Resolution Service
  • Advocacy Service for young people with SEND
  • Local Offer website
    Others
  • Equipment
  • Therapy Services

Direct Payments for SEN

Social care services

Children's social care
  • Help for Families
  • Locality Social Care Teams or equivalent
  • Disabled Children's Team
  • Family Resource Service or equivalent
  • Leaving Care Team or equivalent
  • Direct Payments for Social Care
  • Overnight Short Breaks Service
  • Outreach Service from Short Breaks Centre (e.g. for behaviour management)
  • Other short breaks (funded or partially funded by Social Care) e.g. after school clubs, holiday clubs, sitting services, youth clubs
  • Family based short breaks services
  • Foster placements
  • Other residential placements
  • Counselling Services (commissioned by Social Care)
Adult's social care
  • Counselling Services (commissioned by Social Care)
  • Community Team for People with Learning Disabilities (or equivalent)
  • Adult Services Physical Disability and Sensory Service (or equivalent)
  • Supported Living arrangements
  • Direct Payments for Social Care
Voluntary sector
  • Information and advice
  • Family support
  • Parent support groups
  • After school clubs
  • Holiday schemes
  • Weekend activities
  • Youth clubs
  • Sitting services
  • Residential holidays

Health services

Sexual health services - Reading

In 2014 there were 9,491 first attendances at sexual health (GUM) clinics by residents of Reading. 95% of these attendances were at the Royal Berkshire Hospital (Public Health England, GUMCAD). Figure 5 shows that 53% of these attendances were for women and 62% were for people aged 20 to 34. 70% of attendances from people with a recorded ethnicity were from a White ethnic background.

It should be noted that sexual and reproductive health services in Berkshire are integrated, offering both GUM and SRH. Both types of service may be utilised by attendees in a single visit.

In 2014, there were 3,127 attendances to Sexual and Reproductive Health Services from Reading residents. 94.1% of these attendances were at services in Berkshire and 87.6% were to the Royal Berkshire Hospital Sexual Health Department.

The largest proportion of attendees were aged 20 to 24 (41.7%). Male attendees made up 5.1% of attendances, compared to 11.2% nationally (Public Health England, 2015: Reading Local Authority HIV, sexual and reproductive health epidemiology report).

In 2014, an HIV test was offered at 60.9% of eligible attendances at GUM clinics by residents of Reading and where offered, an HIV test was carried out at 81.8% of these attendances. Nationally, an HIV test was offered at 80.1% of eligible attendances at GUM clinics with an uptake at 77.5% of these attendances (Public Health England, 2015: Reading Local Authority HIV, Sexual and Reproductive Health Epidemiology Report).

Drug and alcohol services - Reading

The figure below shows the number of females who are in drug or alcohol treatment in Reading. Caution needs to be taken when interpreting this data as it is looking at raw numbers and not the number of women in treatment as a proportion of the total who are misusing alcohol or drugs. Lower/higher numbers in treatment may either indicate lower/higher levels of need amongst the population or may indicate a lower/higher proportion of those who require treatment accessing the service that they need. Around 225 women from Reading were in drug or alcohol treatment during 2013/14. Numbers accessing drug treatment in Reading are higher than those accessing drug treatments. Numbers have remained relatively stable over time.

Figure 6: Numbers of females in drug and alcohol treatment
Figure 6: Numbers of females in drug and alcohol treatment

Source: Public Health England

Out of all women who commenced a new treatment journey in 2014/15, fewer than five stated that they were pregnant at presentation.

Stop smoking services - Reading

At the Royal Berkshire NHS Foundation Trust, 6.4% of women attending a booking appointment (November 2015) were smokers. Of those that were smokers, the mean number of cigarettes smoked a day were 5.6. Across all submitters, 10.7% of women attending booking appointments were smokers with a mean number of cigarettes smoked per day of 7.8 (Source: Health and Social Care Information Centre - experimental statistics).

This means that in a whole year, we would expect approximately 203 pregnant women in Reading to be smokers. We can compare this to the number of pregnant women attending stop smoking services.

26 pregnant women from Reading attempted to quit smoking through stop smoking services during 2014/15 with 17 of these been successful.

Antenatal care - Reading

The figure below shows experimental data taken from the new Maternity Data Set. Data is from November 2015 and shows the proportion of pregnant women by the length of gestation at the time of their booking appointment with a midwife. This is a measure of the recommendation that all women to access antenatal care by 90 days of pregnancy. It can be seen that over 90% of women who were seen under Royal Berkshire maternity services were seen by 90 days of pregnancy. 5% were not seen until after 140 days gestation.

Figure 7: Gestation at time of booking appointment
Figure 7: Gestation at time of booking appointment

Source: Health and Social Care Information Centre

The tables below show the data for the national key performance indicators for both the antenatal and new-born screening programmes. Data is shown against the national targets considered to be acceptable and achievable. In the case of antenatal indicators The Royal Berkshire Hospital is meeting at least acceptable standards of coverage across all measures with the exception of foetal anomaly screening.

Table 9: Antenatal screening programme coverage
Table 9: Antenatal screening programme coverage

Source: Public Health England

For new-born hearing screening measures The Royal Berkshire Hospital is meeting acceptable coverage standards.

Table 10: New-born screening programme coverage
Table 10: New-born screening programme coverage

Source: Public Health England

Table 10: New-born screening programme coverage (2)
Table 10: New-born screening programme coverage (2)

Source: Public Health England

North and West Reading and South Reading CCGs are above the acceptable coverage target of new-born blood spot screening.

Health visiting service - Reading

The health visiting service conduct five nationally-mandated contacts with all women and their young children as part of the 0-5 year element of the Health Child Programme. These occur prior to the babies birth, when the baby is new born, when the baby is between 6-8 weeks, when the child is 12 months old, and when the child is between 2 and 2 and a half year of age. Data is shown on the timely coverage of four of these five contacts below. Data is not shown for antenatal visits as a denominator for this measure has yet to be clearly defined making comparisons with national average impossible. The numbers of these visits conducted locally are low due to historical targeting of this contact been limited to higher-risk mums. Figures are now increasing over time since the expansion of this contact to include all mums.

Figure 8: Health Visiting Service Metrics - C2
Figure 8: Health Visiting Service Metrics - C2

Figure 8: Health Visiting Service Metrics - C8i
Figure 8: Health Visiting Service Metrics - C8i

Figure 8: Health Visiting Service Metrics - C4
Figure 8: Health Visiting Service Metrics - C4

Figure 8: Health Visiting Service Metrics - C6i
Figure 8: Health Visiting Service Metrics - C6i

Source: Public Health England

As can be seen in the chart above, the proportion of children from Reading who are been seen in a timely manor across all of these health visiting contacts is is comparable or higher than the national averages with some increases in coverage seen across the first two quarters of 2015/16.

Childhood immunisations - Reading

The national performance target for the uptake of childhood immunisations is not been met in Reading particularly when looking at the uptake of 2 year and 5 year old immunisations including the MMR vaccination.

School nursing service - Reading

The screening of children in reception year takes place during both the Spring and Summer term. Data is available for the Spring term. During the Spring term (Jan to Mar) 2016, the school nursing team screened the hearing of 1,566/2006 children in Reading which resulted in 83 onward hearing referrals. There were 172 children on the targeted caseload due to medical conditions/special needs. Fewer than five one to one contacts were recorded with these children during this time period.

Children and Young People's Integrated Therapies (CYPIT) - data not yet supplied
Audiology - data not yet supplied
Children's community nursing/paediatric service - data not yet supplied
Child and Adolescent Mental Health Services (CAMHS) - data not yet supplied
Palliative care services - data not yet supplied

Inequalities for children and young people with disabilities and SEN

There is a lack of local data and evidence around the inequalities faced by children and young people with disabilities and SEN meaning that we are largely reliant on assumptions that the inequalities experienced by children and young people with disabilities and SEN will be similar to those reported in national research. One source of robust outcome data comes from the education SEN&D data which is presented below.

Education, employment and training - Reading

Achievement in early years for children with SEN support is lower than that of their peers with achievement for children with SEN with a statement/EHC plan lower still. This is a similar picture locally as it is nationally and across the South East region.

Figure 9: Percentage of children achieving a good level of development 2015
Figure 9: Percentage of children achieving a good level of development 2015

Source: Department for Education

Although the gap is not as wide as it is in early years, there is still a significant gap in the achievement of children with SEN when compared to their peers at key stage 2. Again, children with statement/EHC plans have the worst outcomes.

Figure 10: Percentage of children achieving level 4 or above in key stage 2 in reading, writing and mathematics 2015
Figure 10: Percentage of children achieving level 4 or above in key stage 2 in reading, writing and mathematics 2015

Source: Department for Education

At GCSE level, the gap between children with SEN support and their peers is greatly reduced. However, children with SEN with a statement/EHC plan are still seeing markedly worse outcomes than all other children and children with SEN support.

Figure 11: Percentage of children achieving five or more A* to G GCSEs 2014/15
Figure 11: Percentage of children achieving five or more A* to G GCSEs 2014/15

Source: Department for Education

The percentage of the key stage four cohort going on to, or remaining in education or employment shows a stepped pattern which those with SEN support the least likely to have a positive outcome on this measure and with children with no SEN most likely to have positive outcomes. All young people in Reading including those with SEN are more likely to go on to, or remain in education or employment than children on average nationally or regionally.

Figure 12: Percentage of KS4 cohort going on to, or remaining in education or employment destination 2013/14
Figure 12: Percentage of KS4 cohort going on to, or remaining in education or employment destination 2013/14

Source: Department for Education

Figure 13: Percentage of KS5 cohort who entered an A level or other level 3 qualification going to, or remaining in, an education or employment destination
Figure 13: Percentage of KS5 cohort who entered an A level or other level 3 qualification going to, or remaining in, an education or employment destination

Figure 13: Percentage of KS5 cohort who entered an A level or other level 3 qualification going to, or remaining in, an education or employment destination (2)
Figure 13: Percentage of KS5 cohort who entered an A level or other level 3 qualification going to, or remaining in, an education or employment destination (2)

Source: Department for Education

The percentage of the key stage five cohort going on to, or remaining in education or employment is lowest for young people with SEN support when compared to young people with statements and children with no SEN. All young people in Reading are more likely to remain in education or employment than on average nationally and regionally.

Housing and Employment - Reading

Table 11: Adults with learning disabilities – accommodation and employment indicators
Table 11: Adults with learning disabilities – accommodation and employment indicators

Source: Public Health England

Adults with learning disabilities living in Reading are less likely to be in settled accommodation than people with learning disabilities on average nationally. They are as likely to be in paid employment as people with learning disabilities on average nationally.

National strategies and guidance

Determinants of disability and SEN

The National Maternity Review (NHS England, 2016) : https://www.england.nhs.uk/wp-content/uploads/2016/02/national-maternity-review-report.pdf

The National Maternity Review outlines how maternity services should change over the next five year in order to provide women with safer care where they have a greater sense of control and more choice. In order to achieve this, a total of seven areas for change are required:

Childhood neglect: improving outcomes for children - the framework (Department for Education, 2012): https://www.gov.uk/government/publications/childhood-neglect-improving-outcomes-for-children-the-framework

A framework for planning and developing training courses on recognising and responding to child neglect following the themes of: recognition and response, assessment and planning, and intervention and review.

Indicators of neglect: missed opportunities (Department for Education, 2014): https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/379747/RR404_-_Indicators_of_neglect_missed_opportunities.pdf

This report helps children's social care practitioners to spot risk factors associated with a likelihood of actual harm or future harm to very young children.

Improving the outcomes for Gypsy, Roma and Traveller pupils: final report and literature review (Department for Education, 2010): https://www.gov.uk/government/publications/improving-the-outcomes-for-gypsy-roma-and-traveller-pupils-final-report

Local authorities and central government may need to monitor levels of engagement, exclusion and SEN identification to establish whether progress is being made locally and nationally to ensure pupils from these communities have the opportunities to reach their full potential.

NICE guidance relevant to the health and social determinants of SEND:

Antenatal care pathway (NICE)

Smoking: stopping in pregnancy and after childbirth (NICE, 2010) http://pathways.nice.org.uk/pathways/antenatal-care

Antenatal and postnatal mental health: clinical management and service guidance (NICE, 2014)

https://www.nice.org.uk/guidance/cg192

Weight management before, during and after pregnancy (NICE, 2010)

https://www.nice.org.uk/guidance/ph27

Preterm labour and birth (NICE, 2015)

https://www.nice.org.uk/guidance/ng25

Postnatal care pathway (NICE)

http://pathways.nice.org.uk/pathways/postnatal-care

Unintentional injuries: prevention strategies for under 15s (NICE, 2010)

https://www.nice.org.uk/guidance/ph29

Immunisations: reducing differences in uptake in under 19s (NICE, 2009)

https://www.nice.org.uk/guidance/ph21

Child abuse and neglect (In development) (NICE, 2017)

https://www.nice.org.uk/guidance/indevelopment/gid-scwave0708

Looked-after children and young people (NICE, 2010)

Service provision

Special educational needs and disability code of practice 0 to 25 years (Department for Education and Department of Health, 2015):

https://www.gov.uk/government/publications/SEN&D-code-of-practice-0-to-25

Statutory guidance for;

Transition to the new 0 to 25 special education needs and disability system, departmental advice for local authorities and their partners (Department for Education and Department of Health, 2015):

https://www.gov.uk/government/publications/implementing-the-0-to-25-special-needs-system

Non-statutory departmental advice to help local authorities and their partners understand the new provisions of the Children and Families Act (2014) covering the transition period form 1st September 2014 to 31st March 2018. It provides advice on:

Further Department for Education guidance on implementing the 0 to 25 SEN&D System:

SEND: guide for early years settings (Department for Education, 2014) https://www.gov.uk/government/publications/SEN&D-guide-for-early-years-settings

SEND: guide for schools and alternative provision settings (Department for Education, 2014) https://www.gov.uk/government/publications/SEN&D-guide-for-schools-and-alternative-provision-settings

Implementing the 0 to 25 special needs system further education (Department for Education, 2015)

https://www.gov.uk/government/publications/implementing-the-0-to-25-special-needs-system-further-education

SEND: guide for social care professionals (Department for Education, 2014) https://www.gov.uk/government/publications/SEN&D-guide-for-social-care-professionals

SEND: guide for health professionals (Department for Education and Department of Health, 2016) https://www.gov.uk/government/publications/SEN&D-guide-for-health-professionals

https://www.gov.uk/government/publications/residential-special-schools-national-minimum-standards (Department for Education, 2015)

Residential special schools: national minimum standards (Department for Education, 2015): https://www.gov.uk/government/publications/non-maintained-special-schools-regulations-2015

This is an outline of the national minimum standards that apply to state-funded special school and independents residential special schools.

Reasonable adjustments for disabled pupils (The Equality and Human Rights Commission, 2015): http://www.equalityhumanrights.com/publication/reasonable-adjustments-disabled-pupils

Guidance aimed at schools and education authorities to support understanding and complying with the reasonable adjustments duty. It will also help disabled pupils and their parents understand the duty. Specifically, the guide explains how the requirement to include auxiliary aids and services in the reasonable adjustments duty will work in schools and education authorities focusing on practical implementation.

Supporting pupils at school with medical conditions (Department for Education, 2015): https://www.gov.uk/government/publications/supporting-pupils-at-school-with-medical-conditions--3

Statutory guidance on the support that pupils with medical conditions should receive at school. Includes links to other useful resources and templates for;

Healthy child programme 0 to 19: health visitor and school nurse commissioning (Public Health England, 2016):

https://www.gov.uk/government/publications/healthy-child-programme-0-to-19-health-visitor-and-school-nurse-commissioning

This guidance is for local authorities commissioning 'public health services for children and young people' and in particular delivering the Healthy Child Programme 0-5 and 5-19.

Action Plan on Hearing Loss (Department of Health and NHS England, 2015):

https://www.england.nhs.uk/wp-content/uploads/2015/03/act-plan-hearing-loss-upd.pdf

Proposes a plan to tackle the rising prevalence and personal, social and economic costs of uncorrected hearing loss and the variation in access and quality of services experienced by people with hearing loss through;

 

Improving Health and Lives Leaning Disabilities Observatory:

Public Health England's Improving Health and Lives Learning Disabilities Observatory (https://www.improvinghealthandlives.org.uk/publications) contains a number of publications with the aim of improving care and support for all people with learning disabilities. These include:

 

Improving outcomes for children with long-term conditions, disabilities and life threatening conditions (Children and young people's health outcomes forum, 2013):

A report by the long-term conditions, disability, and palliative care sub-group of the Children and Young People's Health Outcomes Forum. It addresses the complexities of developing a robust set of outcomes to drive improvements for children with long-term conditions, disabilities, and life threatening conditions. The report concludes that outcome should not focus on not just the conditions and health's broader determinants but also on the whole families experience of care. The long-term conditions pathway is summarised as consisting of:

  1. An initial phase in childhood of prevention, recognition, assessment, and intervention
  2. A review phase of prevention, recognition, assessment, and intervention
  3. A transition phase to adulthood of prevention, recognition, assessment, and intervention

The following aims are attached to each of these phases:

The Initial phase:

  • Improved access into the health system through the development of care pathways;
  • Improving the quality of initial assessment; and
  • Shortening the time to diagnosis or where a 'working diagnosis' is more appropriate because of the age of the child etc., the time to formation of a management and care plan.

The Review phase:

  • Getting a quality multi-disciplinary assessment that reflects all the child's or young person's and their family's needs; and
  • Getting a quality package of care (including a health care plan for emergency situations or an end of life care plan where appropriate) fully integrated across health, education and social care with access to key working support, information to enable the child or young person and family to manage the condition and ensure timely provision of equipment to support maximum participation.

The Transition phase:

  • Ensuring review of the care plan at key points of transition particularly transition to adult life and services.

All phases:

  • Ensuring that the outcome indicators promote a whole family approach because the health and wellbeing of family (carers) directly impacts on children and young people and their resilience.

Seriously Awkward: How vulnerable 16-17 year olds are falling through the cracks (Pona, Royston, Bracey, & Gibbs, 2015):

http://www.childrenssociety.org.uk/sites/default/files/seriously_awkward_youth-at-risk_full_online-final.pdf

Health-related quality of life for young people with complex health needs and disabilities can be improved by a good transition between child and adult service. A poor transition out of children's services will cause a lack of continuity of care and this can lead to disengagement with services and can have serious negative outcomes for young people. This Children's Society report describes the vulnerability of many 16-17 year olds and the risks that they face. It describes the needs for service to be flexible around their age criteria and the need for young people to have greater involvement and participation in decisions that affect their lives.

NICE guidance relevant to service provision for children and young people with disabilities and SEN:

Social and emotional wellbeing: early years (NICE, 2012)

https://www.nice.org.uk/guidance/ph40

Social and emotional wellbeing in primary education (NICE, 2008)

https://www.nice.org.uk/guidance/ph12

Social and emotional wellbeing in secondary education (NICE, 2009)

https://www.nice.org.uk/guidance/ph20

Looked-after children and young people (NICE, 2010)

https://www.nice.org.uk/guidance/ph28

Transition from children's to adults' services for young people using health or social care services (NICE, 2016)

https://www.nice.org.uk/guidance/ng43

Attention deficit hyperactivity disorder (NICE, 2013)

https://www.nice.org.uk/guidance/qs39

Autism in under 19s: recognition, referral and diagnosis (NICE, 2011)

https://www.nice.org.uk/guidance/cg128

Cerebral Palsy (in development) (NICE, 2017)

https://www.nice.org.uk/guidance/indevelopment/GID-CGWAVE0687

Reducing inequality for children and young people with disabilities and SEN

Levelling the playing field, Equal access to childcare for disabled children (Council for disabled children, 2015):

https://councilfordisabledchildren.org.uk/our-work/campaigning/policy/campaigning-equal-access-childcare

Included amongst the recommendations around making childcare provision equally accessible to children with disabilities is that local authorities should be required to produce a local childcare inclusion plan that sets out how disabled children will be assisted to access all early year settings. This should be supported by;

  • An increase in qualified early years special educational needs coordinators
  • Sufficient funding for non-specialist staff to access training to develop their knowledge and skills
  • Funding for physical adaptations to premise and equipment as appropriate
  • Providers to meet the cost of extra staff where needed to include disabled children and meet regulatory staff-to-child ratios.

Making the case for play, findings of the Sense Public Inquiry into access to play opportunities for disabled children with multiple needs (Sense, 2016):

https://www.sense.org.uk/sites/default/files/the-case-for-play-report.pdf

An inquiry into play opportunities for disabled children which looked to answer questions centred on what the benefits of play for children with multiple needs are; what barriers to access exist; and what can be done to increase access. Recommendations for implementation at a local level were for:

  • Local authorities led by the Health and Wellbeing Board (HWBB) to use data in order to identify children with multiple needs
  • Local authorities to take action against settings failing to meet their legal duties under the Equality Act 2010
  • Local authorities to lead on increasing awareness of the general public and other parents about disabled children
  • HWBB to consider developing additional training of health visitors to enable the to support families of children with multiple needs to learn about and access play
  • Local authorities to provide easily accessible information for parents to find about existing play and support services
  • Play settings to ensure that staff have been trained on multiple needs and disability
  • Play settings to have a play policy which stresses the inclusion of every child
  • Play settings to plan carefully prior to the admission of every child to ensure their needs are met
  • Voluntary sector organisations to share their experience of supporting children with specific impairments and multiple needs. This could include offering training and toolkits on inclusive play.

Equality Act 2010: advice for schools (Department for Education, 2013): https://www.gov.uk/government/publications/equality-act-2010-advice-for-schools

Guidance to help schools understand how the Equality Act affects them and how to fulfil their duties under the act.

Don't Stop Me Now Supporting young people with chronic conditions from education to employment (Bajorek, Donnaloja, & McEnhill, 2016):

http://www.theworkfoundation.com/wp-content/uploads/2016/11/399_Dont_stop_me_now_main_report.pdf

This report suggests that the need to support young people with chronic health conditions in their successful transition from education to employment is acute. Their recommendations focus on four key policy areas;

  1. Careers education and guidance: needs to address particular challenges faced by young people with chronic health conditions. The current provision is limited and not widely promoted with a lack of specialist knowledge around the needs of young people with chronic conditions
  2. Work experience: the barriers to gaining real-world work experience are often greater for young people with chronic conditions
  3. Vocational education: There is a need to ensure that young people with chronic conditions are given the same opportunities to access apprenticeships as other young people and for uptake by young people with chronic conditions to be monitored
  4. Health-related initiatives: There is need to improve access to evidence-based employment services for young people (such as Individual Placement and Support). There needs to be greater recognition by health teams involved in the young person's transition from child to adult health services of the importance of work, and the opportunities for support that are available - this should include the extension of Education, Health and Care plans to better incorporate employment, and the integration of employment into transition planning between child and adult mental health services.

Supporting looked-after children with communication needs (Department for Education, 2011):

https://www.gov.uk/government/publications/supporting-looked-after-children-with-communication-needs

This departmental advice is for local authorities and independent reviewing officers. It provides information resources for people working with children with communication needs with the aim of ensuring that children's views are considered when care plans are created and reviewed.

Working together to safeguard children (Department for Education, 2015):

https://www.gov.uk/government/publications/working-together-to-safeguard-children--2

Statutory guidance on inter-agency working to safeguard and promote the welfare of children.

Protecting disabled children from abuse (NSPCC, 2014):

A report into the particular vulnerabilities of disabled children and young people which leave them open to abuse and how safeguarding practices can work to mitigate these risks through:

  1. Developing  a wider and deeper evidence base to help us better understand the vulnerability of disabled children to abuse and how they can be protected
  2. 2Raising awareness about the abuse of disabled children and challenging the attitudes and assumptions that act as barriers to protection
  3. Promoting safe and accessible services
  4. Raising disabled children's awareness of abuse and ability to seek help including access to personal safety skills training
  5. Building on good practice and measures already in place that help ensure the effective delivery of child protection and criminal justice services for disabled children.

Meeting the needs of young people with learning disabilities who experience, or are at risk of, sexual exploitation (Franklin, Raws, & Smeaton, 2015):

A research study which aimed to detail the current CSE provision for children and young people with learning disabilities; to explore enablers and barriers to good practice; to understand the needs of children and young people with disability who experience CSE; identify gaps in policy, provision, evidence and research; generate evidence-based recommendations for future developments. The report outlines 6 key headline recommendations:

  1. Governments must ensure development, revision and implementation of legislation, policy and guidance to meet the needs of young people with learning disabilities who experience, or are at risk of, CSE.
  2. Multi-agency arrangements must lead to an effective response to young people with learning disabilities who experience, or are at risk of, CSE.
  3. Governments and local agencies, including education providers, should take an active role in raising awareness of CSE among young people with learning disabilities and their parents and carers, and equip and empower them with the skills and knowledge to keep safe and seek help.
  4. Regulatory bodies for education, social care, health and criminal justice should ensure that all inspections, including those relating to child protection or CSE, incorporate a focus on responses to young people with learning disabilities.
  5. Professionals, practitioners and volunteers should be better equipped to respond to young people with learning disabilities who experience, or are at risk of, CSE.
  6. CSE campaigns and awareness-raising activities at national and local levels should include a focus on young people with learning disabilities and be aimed at all stakeholder groups, in order to raise awareness of the sexual exploitation of these young people and encourage action to improve protection.

Local Strategies and guidance

The Local Offer

http://servicesguide.reading.gov.uk/kb5/reading/directory/family.page?familychannel=3

What is this telling us?

Disability is defined in multiple ways across and within different organisations. There is also significant overlap between disabled children and young people with and those with SEN which needs to be understood. In order to successfully joint commission and plan services there is a need for a joint understanding across organisations about how we define the population we are planning for. This needs assessment will support the development of a shared understanding of current, and future needs as priorities for children and young people with disabilities and SEN across health, education, and social care in Reading. It will be continually developed and updated to monitor progress towards improving the health and lives of children and young people with disability and SEN in the local area.

The new code of practice is the statutory guidance which all people involved in planning, commission, and providing care should be familiar with a work to. The new guidance and The Children and Families Act (2014);

  • Covers children and young people from birth to 25 years
  • Focuses on including children, young people and their parents in decision making
  • Focuses on high aspiration and improvement of outcome for children and young people
  • Focuses on supporting children to succeed in education and make a successful transition to adulthood
  • Focuses on strengthening join planning and commissioning between health, social care, and education
  • Replaces SEN statement/Learning Difficulty Assessment with Education Health and Care EHC plans
  • Identifies a need for local authorises to publish a local offer of services for children and young people with disabilities and SEN

Determinants of disability and SEN can be split into categories of health determinants and social determinants. A number of these are modifiable through: public health interventions (e.g. stopping smoking in pregnancy, increasing the coverage of childhood immunisations); the provision of high quality antenatal care early in pregnancy; and early intervention from social care (e.g. reducing the number of children looked after due to abuse or neglect). Therefore, the opportunities for joint planning around disability and SEN occur early on in the life cycle before the birth of a child.

There a multiple inequalities experienced by too many children and young people with disability and SEN. Although, there is limited local data around these and we are unable to measure local levels, we can assume from national research that children and young people with disability and SEN living in Reading will experience inequalities across:

  • Physical health outcomes
  • Emotional health and wellbeing outcomes
  • Lifestyle behaviours (particularly around participation in physical activity and obesity)
  • Access to childcare
  • Access to play opportunities
  • Lack of opportunities to reach full potential in education, employment, and training
  • Risk of youth offending
  • Risk of abuse and neglect including sexual exploitation

All needs assessment should be grounded in an understanding of the local population at risk. The total estimated size of the 0-24 year old population of Reading is 55,300 and is expected to increase to 57,100 by 2025. When looking at the population structure of Reading we can see that the proportion of the population who are aged 0 to 19 is notably larger than the England average. The proportion of the population aged 20 to 24 is also significantly larger than the England average. So, in terms of overall numbers, and the proportion of the population, Reading has a large 0 to 25 year old population.

The health and wellbeing of children in Reading is generally comparable to the national average as measured across a range of key indicators. Areas where children in Reading are experiencing worse outcomes are centred on life expectancy at birth for males, school readiness, young people who are NEET, and childhood vaccination coverage which have a particular relevance when discussing disability and SEN. There will be significant variation in health and wellbeing within different sub-groups of the population. We know that children and young people risk poorer outcomes than the general population which will not be reflected in these figures.

Estimates of the number of children and young people with disabilities and SEN in Reading range from 968 to almost 8,000 depending on the breadth of the criteria of disability been used. Nationally, language disorders and dyspraxia or other developmental co-ordination disorders have the highest rate of prevalence of diagnosis.

There were 642 children in Reading with EHC plans in January 2015 with the percentage of children with a plan as a proportion of all children been similar to the England average. This figure is close to the estimated total prevalence of children with more severe disability. 3,149 children in Reading were receiving SEN support in January 2015 with the percentage of children receiving support as a proportion of all children been marginally higher than the national average. The total of children on EHC plans plus those receiving SEN support brings us closer to the estimated total prevalence of disability when using a broader definition.

The most common categories of need for children with SEN in Reading are social, emotional, and metal health; and speech, language, and communication needs: the proportion of children with a these primary needs is significantly higher than the England average.

In terms of local service use, the key findings of this needs assessment are summarised below;

  • 61% of people attending sexual health clinics were offered a HIV test compared to 80% nationally
  • 203 pregnant women in Reading are estimated to be smokers compared to 26 who attempted to quit through local stop smoking services
  • Over 90% of women seen by Royal Berkshire Maternity service are seen by 90 days of pregnancy
  • The Royal Berkshire Hospital falls just below the acceptable target for foetal anomaly screening coverage
  • Number of antenatal visits by health visitors are historically low due to targeting of this contact to higher-risk mums
  • Childhood immunisation coverage target not been consistently met

Predicted change in levels of needs

In order to consider the future numbers of children and young people with disability and SEN and the types of needs they may have the following factors discussed in this needs assessment so far have been considered: current trends in prevalence; projected changes in population size; and trends in the determinants of disability and SEN.

Although the total 0 to 24 year old population of Reading is projected to increase by only 3% by 2025 (a net increase of 1,800 children and young people), some age groups within the 0 to 24 year old population are expected to see a much higher percentage increase than others. The 10 to 19 year old population is expected to see a 3,500 net increase with the 0 to 9 year old population expected to see a 1,300 net decrease. This indicates a shift in the age structure of the population and a likely shift in the age structure of the population of children and young people with disability and SEN: we are going to see an older population of children and young people with disability and SEN then seen currently. This could potentially see a shift in the level of demand on particular disability and SEN services (for example, transition and employment services).

When looking at the available data on some of the key determinants of disability, the rate of rubella susceptibility in pregnant women, and the rate of children being looked after due to reasons of abuse or neglect is increasing over time in Reading. The size nature of the impact of this on the number of children and young people with disability and SEN in the local area is difficult to predict but represents an opportunity for early prevention and intervention.

The percentage of children with EHC plans/statements in Reading has remained fairly stable in recent years between 2013 and 2015. The percentage of children receiving SEN support is decreasing steadily over time. This indicates that the levels of need will become proportionally higher at the more severe end of the spectrum of disability.

We know that nationally more premature babies are surviving but the pattern of neonatal morbidity and the proportion of survivors affected remains unchanged (Costeloe, Hennessy, & Haider, 2012). The possible impact of this is an increase in the number of children who have long term health and disabilities in need of specialist support.

Unmet service needs and gaps

  • Vaccination coverage in childhood and in women planning a pregnancy
  • Children been looked after due to abuse or neglect
  • Uptake of HIV testing in sexual health clinics
  • Pregnant women been supported to stop smoking
  • Foetal anomaly screening coverage at the Royal Berkshire Hospital
  • Antenatal health visiting contacts
  • Early years foundation support - lack of access to childcare for disabled children
  • Opportunities for play and physical activity
  • Emotional health needs of children and young people with disabilities and SEN and their families
  • Young people remaining in education or employment destinations
  • Lack of local data on the outcomes and inequalities for children and young people with disability and SEN
  • Increasing age of disability and SEN population and the potential shift in service demand (i.e. transition services)

Recommendations for consideration

Prevention

Early identification

Service delivery and access

Transition between life stages

Supporting young people in preparing for adulthood

Further analysis and monitoring

  1. There should be a shared agreement across health, education, and social care on the strategic outcomes which should be developed into a basket of key performance indicators (KPIs) that are regularly monitored and reviewed
  2. A joint awareness of the guidance and good practice such as that included in this needs assessment should be maintained and reviewed
  3. The views of children, young, people and their parents/carers should be included in any future needs assessment analysis
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