Estimating the number of children with a disability or long term illness.
Estimating the number of children with a disability is difficult. There have been many studies, which have utilised a range of sources of national data to estimate how many children there are nationally and these figures have been extrapolated to the local level so that local authorities can estimate how many children there are in their local communities that have a disability. However, these studies have not taken into account the differences in the population that might explain different prevalence rates between different areas of the country.
One such study undertaken by the Thomas Coram Research Unit (TCRU), estimated that the number of disabled children in England is estimated to be between 288,000 and 513,000. The mean percentage of disabled children in England local authorities has likewise been estimated to be between 3.0 % and 5.4%. If applied to the population of Haringey this would equate to between 1,639 and 2,949 children experiencing some form of disability.
A study which attempted to estimate the number of children with a disability at the local level used data from the General Household Survey and the Family Fund Trust. These were published in Chapter 10 (Disability) of The health of children and young people, Office for National Statistics (ONS). This study shows that this has greatly increased the number of children with disabilities compared to the Thomas Coram Research Unit. These figures are described below and are also available on the CHIMAT website (www.chimat.org.uk).
Age Groups:
The following analysis describes estimates from the CHIMAT website and provides age specific estimates for the number of children with both long –standing illness or disability and those for the severely disabled population.
According to the study it is estimated that there are 6153 boys between the ages of 0 and 19 with a long standing illness or disability and a further 32 who are severely disabled. The largest number of boys with a disability is in the 5-9 age group.
Figure 1: Boys with a disability: long-standing illness or disability and severely disabled
Age Group / Long standing Illness or disability / Severely disabled0-4 / 1274 / 14
5-9 / 2025 / 10
10-14 / 1540 / 6
15-19 / 1314 / 2
0-19 / 6153 / 32
Source: CHIMAT
Figure 2 describes the estimates for girls with disability. It estimates that there are 5103 girls aged between 0 and 19 with a long standing illness or disability and a further 15 who are severely disabled. The largest number of girls with a disability is estimated to be in the 10 to 14 age group, although the estimate for those aged 5-9 is very similar.
Figure 2: Girls with a disability: long-standing illness or disability and severely disabled
Age Group / Long standing Illness or disability / Severely disabled0-4 / 1157 / 7
5-9 / 1404 / 4
10-14 / 1406 / 3
15-19 / 1136 / 1
0-19 / 5103 / 15
Source: CHIMAT
The estimates suggest that there are more boys than girls with a disability in each of the 4 age groupings described. Thus boys account for 55% of all disabled children and young people.
Figure 3 describes the combined number of children and young people estimated to have a disability. The largest proportion of children with a disability in Haringey is in the 5 to 9 age group, accounting for 30.5% of the total. 0 to 4 and the 15 to 19 age groups have the lowest % of the total (both 21.7%)
Figure 3: Children and Young People with a disability: long-standing illness or disability and severely disabled
Age Group / Long Standing Illness or disability / Severely disabled / % of all disabled children / Prevalence rate0-4 / 2431 / 21 / 21.7%
5-9 / 3429 / 14 / 30.5%
10-14 / 2946 / 9 / 26.1%
15-19 / 2450 / 3 / 21.7%
0-19 / 11256 / 47
Source: CHIMAT
Socio-economic background:
The study highlighted that the prevalence rates of children and adolescents with mild disabilities were 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 background.
Benchmarking Special Educational Needs in Haringey with England
Each local authority submitted the number of children on their Statement of Educational Needs register in 20??. This enables a comparison to be made with England. Figure 4 describes the rate of specific disabilities per 10,000 pupils in Haringey schools compared to children in all England schools. The categories highlighted in red are for categories where Haringey has a higher rate than the England average. For learning difficulties Haringey has higher rates in secondary schools for all classifications of learning disabilities except for specific learning disabilities. In primary schools the rates are lower in Haringey than in England.
Figure 4: Pupils at Primary schools with specific educational (Haringey Vs England)
Disability / Haringey (Rate per 10,000) / England (Rate per 10,000)Primary / Secondary / Primary / Secondary
Specific learning disability / 4.8 / 9.2 / 7.5 / 13.0
Moderate learning difficulty / 9.2 / 27.0 / 17.2 / 18.4
Severe learning difficulty / 0.5 / 1.5 / 1.1 / 0.7
Profound and multiple learning difficulty / 0.4 / 0.7 / 0.4 / 0.1
Behavioural, emotional and social difficulties / 12.4 / 38.0 / 14.6 / 23.6
Speech, language and communication / 40.1 / 14..4 / 22.9 / 7.5
Hearing impairment / 1.4 / 1.1 / 1.8 / 2.2
Visual impairment / 0.7 / 0.8 / 1.0 / 1.2
Multi sensory impairment / 0.2 / X / 0.1 / 0.1
Physical disability / 1.8 / 2.4 / 3.2 / 3.0
Autism spectrum / 10.0 / 8.8 / 5.8 / 7.0
Other difficulty / disability / 4.0 / 6.1 / 3.3 / N/A
Source: CHIMAT
Haringey also has a higher rate of children with behavioural, emotional and social difficulties in secondary schools than England, but again, the rate is lower in primary school children.
The rates of speech, language and communication difficulties in both primary and secondary schools in Haringey are almost double the rates of England and account for the largest burden of disability recorded on the SEN registers. Rates of Autism are also high in Haringey compared to England. This is particularly the case for primary school children where rates are higher than for secondary schools.
Local Data:
The studies that have thus far estimated the number of children with disabilities either extrapolated national data to the Haringey population, estimated using surveys or relied on data provided by specific services such as the Special Education Needs database (SEN). The following analysis describes data on children with disabilities derived by combining data from both the local authority and services provided by the NHS to provide a local prevalence of children and young people known to statutory services. Of course, there will be a number of children with disabilities of a milder nature that have not been picked up by these services. The following analysis suggests population groups that may be under estimated which may indicate that there is unmet need in these areas.
Methodology
Data sets were collected from departments that had been suggested by the head of children and disabilities in the London Borough of Haringey and the commissioner for children’s services in Haringey GP.
The data sets were as follows:
Figure 5: Data sources
Local Authority / Whittington HealthStatements of Educational Needs (SEN) / Physiotherapy
Integrated additional support / Speech and Language Therapy
School Action Plus / Dietetics
Educational Psychology / Occupational Therapy
Specific services (Autism, SAL, Visual, Hearing) / Hearing
A minimum data set was requested from each service. In some cases this was provided by the service in other cases the service provided the entire database that included other fields.
The data variables that were requested were as follows:
First Name, Surname, Date of Birth, Gender, postcode, ethnicity and diagnosis.
Once the date sets were received the following methodology was used:
Each data set was “cleaned up” to ensure that data elements such as the date of birth and postcodes were displayed in the same format. Each data set was inserted into two master files; one for the local authority and the other for the NHS. At this point the data was combined by matching postcodes, names and dates of birth. Where all fields matched the data could be combined, where names and dates of births were matched but where postcodes were not available an assumption was made that this was a match (this was necessary since there were a number of missing postcodes). Where names and dates of birth were the same but postcodes were different it was not possible to ascertain a direct match. Therefore there is a possibility that there is an over counting. In addition, there were a number of cases were dates of birth and postcodes matched but the name was spelt slightly differently. In cases such as these an assumption was also made that these data records should be matched.
A full diagnosis was developed during the process. For example a child may have a behavioural disorder and a physical disability. In cases where there is co-morbidity all diagnoses are recorded in one line of the combined data set. At this stage it is possible to estimate the number of children known to the health service and the number known to the local authority.
A similar process was then undertaken to combine the two data to create a complete data set that estimated the total number of children known to both agencies. The final data set was analysed to describe the range of disabilities and the demographic features of those children.
Since it was clear at an early stage that the data was at best questionable a further piece of analysis was undertaken to quantify the quality of the data so that this can be highlighted to the appropriate services.
Disability in Haringey: The local picture
Disability by age group:
The mean age for all children and young people known to services is 10.2. For those known to health services the mean age is 8.2 and for those known to the local authority the mean age is 10.6. This is evident in the following graphs which clearly show the difference in the age profiles between health and council data.
Figure 6 shows the distribution of ages of children known to the local authority. The highest numbers are children between 7 and 16 years of age. The data is normally distributed such that there are fewer children and young people at both ends of the scale. The mode is 9 years of age.
There are a significant number of adults over the age of 20 that have been included in this analysis that represent the peak at the extreme of figure 6 (n=71).
Figure 6: Age profile of children with disability (local authority data)
Source: London Borough of Haringey
Figure 7 represents the distribution of ages for children and young people known to Whittington Health services. There are a fewer number of children who receive services (n=710) compared to the number of people known to the local authority. The distribution of ages is not normally distributed with peaks in children aged 1 and those between the ages of 7 and 9. The mode is 1 which accounts for 9.5% of all children known to health services.
Figure 7: Age profile of children with disability (local authority data)
Source: Whittington Health
Since the numbers of children and young people known to health services is small once combined with the local authority data the profile remains similar to the local authority profile and it remains normally distributed. However, the peak in the 1 year old health data is now evident in the combined profile.
Figure 8: Age profile of children with disability (combined)
Source: Whittington Health and London Borough of Haringey
Using the ages of the children it is possible to calculate the prevalence of children and young people known to services (again, this should not be confused with true prevalence since there is likely to be a number of children and young people that remain undiagnosed and are not recorded anywhere.
Figure 9 and figure 10 describe the prevalence across age groups for those known to services. Prevalence rates are highest in the 10-14 age group and lowest in the 0-4 age group. Prevalence rates are higher in the local authority than in those known to health service. This is clear, since the number known to the council is 2675 and for health 710.
Figure 9: Prevalence of children with disability known to statutory services.
Age Group / Health / Council / Combined0-4 / 1.07 / 1.48 / 2.16
5-9 / 1.40 / 5.08 / 5.79
10-14 / 1.25 / 6.33 / 6.79
15-19 / 0.60 / 3.92 / 4.14
0-19 / 1.09 / 4.09 / 4.62
Source: Whittington Health and London Borough of Haringey.