Disabled Children and Young People
- Key issues and gaps
- Who is at risk and why
- The level of need in the population
- Current services in relation to need
- Service users and carers opinion
- Projected service use in 3-5 years and 5-10 years
- Expert opinion and evidence base
- Unmet needs and service gaps
- Key contact
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 Department for Education (DfE) has stated that:
- Disabled children and young people currently face multiple barriers which make it more difficult for them to achieve their potential, to achieve the outcomes their peers expect and to succeed in education.
- 29% of disabled children nationally live in poverty.
- The educational attainment of disabled children is unacceptably lower than that of non-disabled children and fewer than 50% of schools have accessibility plans.
- Disabled young people aged 16-24 are less satisfied with their lives than their peers and there is a tendency for support to fall away at key transition points as young people move from child to adult services.
- Families with disabled children report particularly high levels of unmet needs, isolation and stress.
- Only 4% of disabled children are supported by social services. A report by the Audit Commission in 2003 found that there was a lottery of provision, inadequate strategic planning, confusing eligibility criteria, and that families were subject to long waits and had to jump through hoops to get support.
- The prevalence of severe disability is increasing.
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:
- 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.
- 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.
- Foetuses being exposed to drugs and/or radiation - prescription drugs, environmental pollutants and radiation can cause birth defects.
- Poor maternal nutrition - deficiencies in key vitamins and minerals can lead to disabilities, for example hydrocephalus and spina bifida.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
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 Haringey this would equate to between 1,639 and 2,949 children experiencing some form of disability.
Chapter 10 (Disability) of The health of children and young people, Office for National Statistics (ONS), 2004 calculated prevalence rates using two sources – the General Household Survey (GHS) and the Family Fund Trust (FFT) register of applicants. The resulting age-specific estimates are as follows for Haringey.
The table below shows estimated numbers for mild disability. Children aged 0 to 4 years display lower prevalence than children in the higher age groups. This can be contrasted with the data from the second table which indicates the estimates of severe disability and where the rates are higher for children in the 0 to 4 age group.
ONS 2011 - Estimated populations aged 0 to 19 years
Link to ONS methodology: estimated children living with longstanding illness or disability
Haringey - Count
Data Source: unpublished analysis of Family Fund Trust statistics
ONS 2011 - Estimated population aged 0 to 19 years
Link to ONS methodology: estimated children living who are severely disabled
Data Source: unpublished analysis of Family Fund Trust statistics
The prevalence rates of children and adolescents with mild disabilities were found to be higher for those from semi-skilled manual and unskilled manual family backgrounds. The prevalence of children with mild disabilities from professional family backgrounds were lower in comparison to the other socio-economic groups. The rate of severe disability was found to be greatest amongst children from semi-skilled manual family backgrounds, whilst the lowest rates were for children from professional and managerial family backgrounds.
More data can be found in the:
- Haringey (2013) - Disabled Children in depth analysis (DOC, 542KB)
- Children with Disabilities Needs Assessment. (DOC, 546KB)
Haringey Clinical Commissioning Group (CCG) commissions a range of health services. This includes acute hospitals who see children with disabilities or complex health needs who need A&E, outpatient and inpatient services including investigations and surgery as required. In addition Haringey CCG 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. 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 14 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.
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. There were 140 open cases in the Disabled Children Team. This number includes 10 with Child Protection Plans and 20 Children in Care.
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. The number of children and young people with disabilities accessing short breaks services is 440.
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.
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.
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
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.
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 2), the national Aiming High for Disabled Children programme (see footnote 3) and the DfE current Green paper: Support and aspiration: A new approach to special educational needs and disability (see footnote 4) 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.
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.
- 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.
- 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 a range 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.
Susan Otiti, Assistant Director of Public Health, Haringey Council
- Mooney, A., Owen, C. and Statham, J. (2008) Disabled Children: Numbers, Characteristics and Local Service Provision Research Report (external link)
- Dept of Health NSF (2004) – standard 8: Disabled children and those with complex needs children with disabilities (PDF, 483KB)
- Aiming High for Disabled Children (external link)
- Support and aspiration: A new approach to special educational needs and disability - A consultation DfE (external link)
- Haringey (2013) - Disabled Children in depth analysis (DOC, 542KB)
- 5. Haringey (2014): Children with Disabilities Needs Assessment (DOC, 437KB)
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