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Disabled Children and Young People

Introduction

Disabled children and their families face distinct and often challenging issues that require a range of dedicated and often specialist responses from public services. The needs of disabled children, young people and their families are unique to them, often complex, and will change over time. The challenge is to understand these needs and develop a system around them that is flexible enough to meet the needs of the person and their families.

The numbers of children with a disability, and the complexity of some disabilities, is increasing due to improvements in medical science and interventions as well as earlier and more robust assessments (see footnote 1).

To reach their potential to make a positive contribution to society, children and young people with disabilities and their families need co-ordinated and effective support from statutory health, education, social care and voluntary services. Integrated, joint agency approaches need to be further enhanced to ensure the most effective and efficient commissioning and targeting of resources for this population group.

The Disability Discrimination Act 1995 defines a disabled person as someone who has a physical or mental impairment, which has substantial and long term adverse effects on his or her ability to carry out normal day-to-day activities.

Based on this definition The Department for Children, Schools and Families (now the Department for Education) estimates around 7% of children have a disability. In Haringey, this would equate to around 3,920 children and young people with additional needs/disabilities aged 0-19 years.

For the purposes of this chapter we include two cohorts of children and young people including those whose definition may not be fully covered by the DDA – children with:

  • Complex disabilities - children usually with a medical diagnosis that means the impact significantly affects their growth, development, learning and physical skills.
  • Additional needs - children who have developmental delays in language, learning or motor development which impact on their learning, socialisation and educational attainment, resulting in the need for support in school over and above that that can be managed within schools resources – therefore requiring a child to have a statement of special educational needs.

Special Educational Needs

The SEN Code of Practice provides practical advice to Local Authorities, maintained schools, early education settings and others on carrying out their statutory duties to identify, assess and make provision for children’s special educational needs (see footnote 2). Children with disabilities may well require a statement of SEN to ensure the appropriate support is available to them to support their learning and education.

The Department for Education consulted on changes to SEN and is currently piloting some of the suggestions – for more detail see the green paper Support and aspiration: A new approach to special educational needs and disability. The vision for reform set out in this Green Paper includes wide ranging proposals to improve outcomes for children and young people who are disabled or have SEN, minimise the adversarial nature of the system for families and maximise value for money. Local engagement in Haringey is ongoing with families in regard to potential future changes in this area. This could be a key positive area of activity through 2012/13.

Details on tackling infant mortality gap, unintentional injuries in children and young people, young carers, diet and nutrition, children and young people mental health, children in care, children’s dental health, parenting and safeguarding for children are dealt in other sections.

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Key Issues and gaps

Projections suggest the volume and prevalence of children and young people with disabilities will continue to rise over the next ten years. It is therefore important to ensure that the correct services are in place to prevent childhood disability and support those who are disabled. Key issues will be:

  • Ensuring the correct skill mix and training amongst health, education and social care staff to meet increasing prevalence and complexity.
  • Ensuring timely access to specialist equipment, schooling and housing adaptations.
  • Commissioning intentions in health locally will need to review and enhance access to community healthcare to support discharge from hospital, sustaining care close to home and minimising reliance on acute inpatient or out of area care for children and young people with acute and complex needs.
  • Working with the third sector and current public services to ensure services support and strengthen resilience in families who have children with developmental or acquired disability.
  • Enhancing integration of local community services for children with disabilities across heath, education and social care to continue to improve services for families that support a single point of access, clear pathways and access without eth need to repeat the ‘story’ or information on their child, co-ordinate planning and care in away that makes sense for families. This will also enable the introduction of the anticipated ‘single’ assessment and care plan (Green paper).
  • Identifying areas of unmet need caused by increased demand or decommissioning of services that may impact on children. Areas that need some review include children with conduct disorders where others services may be able to offer effective intervention; treatment of children with mild/moderate muscular-skeletal difficulties (e.g. whiplash/hip/knee pain).
  • Reviewing the impact of Any Qualified Provider (AQP) on children, in particular national changes and local needs regarding the provision of wheelchair services to children.
  • Ensuring planned, well communicated transition to adult services including engagement with the personal health budgets pilot.

Reviewing palliative care services available to families and working in partnership with families and hospices to support children, young people and their families at this time.

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Who is at risk and why

Disabilities may be developmental or acquired. Sometimes, several factors may combine to cause a disability and often the exact cause is unknown. There are however recognised risk factors:

  1. Chromosomal and genetic abnormalities – examples include syndrome such as Down syndrome; sickle cell disease causing increased risk of stroke; and phenylketouria; can be caused by chromosomal abnormalities or gene mutations.
  2. Premature birth and/or low birth weight babies - Babies who are born early and/or have a low birth weight have approximately a 20% chance of having a disability. Premature birth and low birth weight can be caused by maternal lifestyle choices, for example smoking or poor nutrition. However for a majority of women who have preterm births, the causes are unclear.
  3. Foetuses being exposed to drugs and/or radiation - prescription drugs, environmental pollutants and radiation can cause birth defects.
  4. Poor maternal nutrition - deficiencies in key vitamins and minerals can lead to disabilities, for example hydrocephalus and spina bifida.
  5. Maternal use of drugs and alcohol - excessive use of recreational drugs and alcohol amongst mothers during pregnancy can lead to developmental problems and/or disabilities in the child.
  6. Maternal smoking - smoking restricts the oxygen supply to the baby raising the risk of low-birth weight and premature birth, both of which increase the probability of a child being disabled.
  7. Mother and baby having different blood types - when a mother’s blood type is different to the baby’s, there is risk that the mother’s body forms antibodies that can attack the baby’s blood causing disabilities, such as cerebral palsy and deafness.
  8. Infectious diseases suffered by mothers and children - a number of viral and sexual infectious diseases suffered by mothers during pregnancy, including measles and HIV, can cross the placental barrier and cause disabilities. Diseases suffered by children in early childhood, such as meningitis and measles can also cause disability.
  9. Parental age - older and younger parents are more at risk of complications that can result in childhood disability. Those under 20 are more at risk of poor nutrition and poor placental transfer of food and oxygen, whereas those who have children later are more likely to suffer from chromosomal abnormalities.
  10. Economic disadvantage - families from less advantaged socioeconomic backgrounds tend to be disproportionately represented amongst those with disabilities. Those from more economically disadvantaged backgrounds may be more vulnerable to lifestyle factors that can contribute to disability and disability itself can be a major contributor to material poverty.
  11. Physical injury - injury to the mother’s abdomen during pregnancy can result in disabilities when the child is born. Accidents and injuries suffered by children can also result in disability these can be life long i.e.: when a child suffers extensive head injury.
  12. Mental health in children with moderate to severe learning difficulties - Children with significantly challenging behaviour which is not addressed early enough to prevent costly and challenging placements away from home e.g. children with unaddressed sensory difficulties leading to mental health/behavioural feeding.
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The level of need in the population

An Institute of Education report “Disabled Children: Numbers, Characteristics and Local Service Provision” (2008) (see footnote 1) highlighted that there is no nationally consistent definition of disability and therefore no single data source by local area. They have, however, used data and surveys to produce estimates of the numbers of disabled children. Their estimate of the number of disabled children in England is varies between 288,000 and 513,000, with a mean percentage of disabled children in each Local Authority of between 3% - 5.4% of the total population. In 2008 the data and estimates for Haringey are 1568-3577.

Figure 1: Disabled children: Numbers, Characteristics and Local Service Provision, 2008

On 6 July 2011 the total number of statements maintained and/or funded by Haringey was 1382 which represents 2.49% of the 0 -19 years population. This captures children of school age with additional needs who may not meet the disability criteria. In addition the number of children with statements does not capture all children such as those below school age or with newly acquired disabilities or complex medicals needs

The increase in numbers of children and young people with complex learning difficulties and disabilities (CLDD) is widely recognised by the Government (see footnote 3) independent researchers (see footnote 4) academics (see footnotes 5 & 6) and Ofsted (see footnote 7). Between 2004 and 2010 nationally the number of families recognised as having a disabled child increased from 700,000 to 950,000. Between 2004 and 2009 the numbers of children with severe learning disabilities increased by 5.1% and those with profound and multiple disabilities 29.7% (see footnote 8). The prevalence of PMLD in the older child/young adult age range is increasing by 4–5% annually (see footnote 9).

Medical intervention and improving technology support increased infant survival at birth, increased survival following traumatic injury, and in supporting children with severe acute or chronic health conditions. As a result children with disabilities and complex health needs are surviving longer than previously; over 85% of children with congenital or chronic conditions now survive into adolescence and adulthood (see footnote 9).

There is also a rising population of children with a diagnosis of Autistic spectrum disorders. Researchers generally indicate improvements in diagnostic practices rather than an overall increase (see footnote 10).

We know that mothers of lower socio-economic status are more likely to smoke and less likely to access health care during pregnancy. These can be contributory factors to low birth weight babies which as well as being a known risk factor for infant deaths is also a cause of learning difficulties in children.

There also appears to be increased prevalence locally due to the mobility of the population - there is a large population of temporarily housed residence who are often placed in the borough due to the low cost housing stock, this includes new arrivals into the country. For Haringey this increase the prevalence of children with disabilities and complex needs who have not having had previously adequate health care, equipment or education. The table below shows the number of children and young people with a range of disabilities who moved into Haringey in 2011-2012.

Figure 2: Total No of children moved in borough, 2011–2012 with a statement of SEN.

Office of National Statistics population projections estimate that there are between 560 children and young people with the most complex disabilities and 3,920 children and young people with the broader definition of disability, aged 0 to 19 years, living in Haringey. The Marmot Review (2010) found the London Borough of Haringey to have the lowest percentage (41.9%) of children showing satisfactory development at age 5 of any local authority in England.

Figure 3 shows a breakdown of haringey children with SEN in mainstream and secondary schools:

Figure 3: Children with an SEN in Haringey.

Locally – Increased Complexity of Need

In addition to the predicted increase nationally in disabled children we note that the complexity of medical need is also increasing. This has been particularly prevalent locally. Over the last 3 years in Haringey the number of babies under 15 months with severe dysphagia (eating and swallowing difficulties) has increased from 15 per year to 40 per year. Whilst this seems like a very small number these are the children with the most complex disabilities who will require multiple therapies, nursing and equipment over their life time as well as having high need in terms of family support, housing adaptations and specialist schooling.

A key measure of the increase in complexity of need is the number of children now requiring non oral feeding. Children who need to be fed through alternative means to achieve sufficient nutrition and hydration have significant levels of complexity including chronic lung disease, evolving motor disorders (emerging cerebral palsy) muscular dystrophies etc. There nutritional and hydration needs are met by the dieticians in borough. The following shows the number of children seen by Haringey dieticians with the highest level of need, compared to other boroughs.

Figure 4: Comparison to local boroughs in 2010 – numbers of children being seen by the dieticians

Figure 5: Enterally fed children in local boroughs - 2010

Haringey continues to have high numbers of non-orally fed children, and children with eating and drinking difficulties due to physical difficulties. Children with this level of muscular difficulty in eating and drinking are also likely to need speech and language input around safe eating drinking and will have communication difficulties.

The population of children attending the boroughs special schools is showing a steady increase in complexity. Figure 6 shows the numbers of children in each band over a four year period. Band A being the most highly complex and band C being a child with short term needs. The numbers of children with band A needs have shown a slight increase, children needing Speech and Language Therapy is increasing overall in line with the increased diagnosis of children with Autistic spectrum Disorders. Children with unstable medical conditions, including mental health difficulties attending the schools requiring school nursing has also increased significantly over the last four years from 137 to 310.

The following is a chart to show the increased physical difficulties of the children attending the Vale Special School (for children with physical difficulties and medical needs) using the gross motor function scale. A child with level 1 may have mild diplegia, however a child with level V would be fully wheelchair dependant. Generally there are less mild and more severe children. This means that that children and young people with less severe physical disabilities are having their needs met in mainstream schools.

Figure 6: Severity of physical disability in the Vale Special School in Haringey

Other Children with Additional Needs

There are now over 650 children and young people with a diagnosis of Autism Spectrum Disorder (ASD) – an increase of 60% since October 2007 (200).

There are 82 children and young people with visual impairment and over 400 with hearing impairment.

As a result of a very clear inclusion policy less than 1% of Haringey’s 5 -15 year olds are in maintained special schools (England average 1.19%).

Children with additional needs, including children with a diagnosis of ASD, pose different challenges in terms of service gaps and need. The child with medical needs is often identified at birth; however a child with additional needs whose developmental delay is undiagnosed at birth can often manage early unstructured schooling and social settings but is significantly challenged when schooling and environmental demands increase. Early intervention for children where their communication is affected is key at this stage, and services are increasingly being concentrated on the younger age groups in order to meet with need and prevent later difficulties.

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Current services in relation to need

Health

NHS North Central London commissions a range of health services for children and young people with disabilities on behalf of people in Haringey over and above primary care. This includes acute hospitals who see children with disabilities or complex health needs who need A7E, outpatient and inpatient services including investigations and surgery as required. In addition NHS North Central London commissions community based health services to support children’s health and development outside of hospital. The main provider of these community services is Whittington Health whose service to children with disabilities is provided by paediatricians, therapists and specialist nurses.

Children with complex disabilities are often referred to community services shortly after birth, occasionally directly from hospital. Services are provided to pre-school children at our local Child Development Centre, in children’s homes, through children’s centres clinics and playgroups. School aged children are seen in mainstream schools and special schools as well as at home and in clinics. The services are jointly funded for children with additional needs, particularly for Speech and Language Therapy.

Service planning for children with disabilities is co-ordinated through the multi-agency Early Support panel, utilising national early support and team around the child models. Many children are medically complex and are co-managed by tertiary providers such as Great Ormond Street Children’s Hospital or the Royal London Hospital.

NHS continuing care packages

There are approx 20 children in Haringey (0-18 years) who are receiving continuing health care packages. These support them in healthcare at home, minimising dependence on hospital based care. Children and young people who need home based treatment are assessed and supported by a children’s community matron with bespoke care commissioned directly from the PCT and delivered by a wide range of providers.

Local Authority

The Local Authority has an integrated education and social care children with disabilities and additional needs service. They work in partnership with health to identify and support children with additional needs and disabilities both at school and at home.

Social care services

Children and young people with disabilities between birth and up to their 18th birthday (or up to 19 if they remain in education) are eligible to receive support from children’s social care services, if their development is significantly impaired and they need to receive significantly more personal care and supervision than a child without disabilities of similar age and circumstances. In 2010-11 there were140 open cases in the Disabled Children Team. This number includes 10 with Child Protection Plans and 20 Children in Care.

Short breaks

Daytime, evening, weekend and overnight activities that provide a break for parents and a social activity for children and young people are available from a number of statutory and voluntary sector providers in Haringey. This provision is highly valued by young people and their parents. Over the three years of the Aiming High programme the number of children and young people with disabilities accessing sort breaks services increased from 230 in 2008 to over 650 in 2011.

Engagement with parents/carers has highlighted how much value is placed upon the short breaks provision and the role it can play in preventing family breakdown. Increased short breaks funding has been provided by Aiming High and this has resulted in a decrease in the number of children with Child Protection Plans, the number taken into care and a reduction in the number of children living more than 20 miles from Haringey.

Direct payments

The Aiming High programme promoted the take up of Direct Payments. Since 2008 the number of families receiving Direct Payments has increased from 29 to 103 in 2011. The uptake of Direct Payments is concentrated in children and young people aged 6 to 18 years old. Proportionally few families with children under 5 choose direct payments.

When consulted about their experience of Direct Payments in 2009, those parents who responded generally felt that they benefited from the flexible way they could arrange their own services.

Work on market development is also ongoing to increase the range of provides available for families to choose from.

Transition

There is multi-agency planning process, designed to plan for the transition of children with disabilities from childhood to adulthood. This process begins when the child is in Year 9 and a transition plan outlines the role of different agencies moving forward. Planning includes consideration of benefits, further education, higher education, employment, health issues, transport, housing, leisure opportunities, social care services, direct payments and individualised budgets.

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Service users and carers opinion

At their annual reviews (statement of SEN) children and young people have told us that they would like:

  • Access to groups for their therapy
  • Therapy to support their use of leisure time e.g. using gyms
  • Be able to experiment with new skills in private
  • To be able to make friends and go to leisure activities with their peers
  • To be involved in planning and choosing support packages including choosing staff for personal care needs;
  • To be understood by their families and peers
  • To be able to take risks and not be supported sometimes
  • To be listened to; to be involved

Parents /carers have told us that they would like:

  • Professionals to make information available at the right time and frequently
  • Training for all professionals e.g. awareness raising for SEN
  • Training for all professionals re working with families
  • Information for parents (sign-posting) available in every school/pre school/doctors’ surgeries/all public facilities
  • One assessment and planning process which is less stressful and time consuming for parents
  • More preventative work before escalation
  • Assessments which take account of wider family needs
  • Professionals to have an overall understanding of children in terms of home, emotional and medical issues
  • Joint training for all services involved in assessment and delivery of services
  • Greater disability awareness for all children
  • All year round support not just the academic year
  • Improved level of support for siblings and young carers
  • Continuity of short break
  • Improved provision in specialist and local colleges
  • Supported living and employment opportunities
  • Same choices as able bodied i.e. gap year
  • Local courses linked to employers
  • Mental health support
  • Travel training for young people in order to access more provision
  • Constructive information sharing between schools and placements
  • Single point of contact
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Projected service use in 3-5 years and 5-10 years

Nationally, the number of children with severe disabilities and complex needs have been increasing with higher survival rates of babies and children with congenital anomalies, trauma or illness; a trend towards more high-risk pregnancies; and also more rigorous diagnosis. We therefore predict:

  • Increased complexity of need.
  • Increased Hospital admission and early discharge.
  • Increase in number of children with acquired disabilities.
  • Increase in number of children with complex needs moving in borough.
  • Increased in number of children with complex needs receiving their provision in their local community.
  • The key early data is a 4-5% of children with profound and multiple learning disabilities who will survive into adulthood.
  • Services will need to be commissioned more efficiently, with increased thresholds (for non disability services), or with increasing investment to meet this demand.
  • The key need to be early intervention and prompt support for hospital discharge or minimising hospital admission to release funding fir more intensive community based alternatives.
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Expert opinion and evidence base

Evidence for increasing prevalence has been given earlier.

Analysis of best practice suggests the following factors are important for the successful delivery of services for children with disabilities:

  • Support that is tailored to the child and the family.
  • Early intervention.
  • Services being seamless and coordinated across agencies.
  • Having a well trained and confident workforce.
  • Effective data collection and data sharing protocols across agencies.
  • Service users, individual agencies and providers treated as equal partners.

The NSF for children with disabilities (see footnote 11), the national Aiming High for Disabled Children programme (see footnote 12) and the DfE current Green paper: Support and aspiration: A new approach to special educational needs and disability (see footnote 13) give a good overview of these issues based on national evidence research and consultation with stakeholders including children and young people with disabilities and their parents.

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Unmet needs and service gaps

Outcomes of current strategic plans and feedback from consultations with service users and professionals, suggests that preventative and support services could be developed in the following ways to prevent unmet need and service gaps. The best practice findings discussed above should be considered when considered how to develop any additional services.

  • Develop joint commissioning between health and education and social care to ensure needs are met through an integrated approach and promote co-located or effective virtual teams across health, education, social care and the third sector.
  • Investment in Early Support provision to ensure integrated processes are embedded from birth to 25 years.
  • Maintain short break provision to build resilience in families, prevent family breakdown and support children and young people to access local services.
  • Improved and supported discharge from hospital and preventing re-admission for children with chronic high level complex needs including appropriate levels of therapy, nursing and other support packages.
  • Support to reduce the impact of acquired disabilities on the family.
  • Recruit and develop the services of local foster carers to meet complex needs, including post operative medical needs.
  • Ensure planning takes into account the increasing numbers of young people with autism including young people with high functioning autism in transition.
  • Develop local residential provision for up to six children with complex needs requiring short and medium term stays, including those requiring intense post operative care.
  • Ensure we have arrange of services to meet the needs of children with ASD and challenging behaviours
  • Commission transitional and rehabilitation step-down beds.
  • Consider how the psychological support needs of the parents of children with disabilities are addressed.
  • Review and revise processes to meet the recommendations of the Green Paper ‘Support and aspiration: A new approach to special educational needs’ DfE 2011.
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Key Contact

Phil Di Leo Head of Additional Needs and Disabilities Haringey Council

Philomena.DiLeo@haringey.gov.uk

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Footnotes

  1. Mooney, A., Owen, C. and Statham, J. (2008) Disabled Children: Numbers, Characteristics and Local Service Provision Research Report (external link)
  2. SEN Code of practice (PDF, 3MB - external link)
  3. Department for Education (2011) Support and Aspiration: A new approach to special educational needs and disability – a consultation. Norwich: The Stationery Office.
  4. Hartley, R. (2010) Teacher Expertise for Special Educational Needs: Filling in the gaps (Research note: July). London: Policy Exchange.
  5. Emerson, E. (2009) Estimating the Future Number of Adults with Profound and Multiple Learning Disabilities in England. Lancaster: CeDR, Lancaster University.
  6. Emerson, E. and Hatton, C. (2004) Estimating the Current Need/Demand for Supports for People with Learning Disabilities in England. Lancaster: Institute for Health Research, Lancaster University.
  7. Ofsted (2010) The Special Educational Needs and Disability Review: A Statement is not enough. London: Ofsted.
  8. Department for Children, Schools and Families (2009) Progression Guidance 2009–10. Annesley:
  9. Yeo, M. and Sawyer, S. ABC of adolescence Chronic Illness and Disability , BMJ 2005, March 26; 330 (7493); 721-723
  10. Katikireddi , V. Increase in autism is due to changes in diagnosis, study claims BMJ 2004;328:364 (14 February)
  11. Dept of Health NSF – standard 8: Disabled children and those with complex needs children with disabilities
  12. Aiming High for Disabled Children (external link)
  13. Support and aspiration: A new approach to special educational needs and disability - A consultation DfE (external link)
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Page Last Updated: 4 April 2013

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