Learning Disabilities

This topic area covers statistics and information relating to learning disabilities, Down’s syndrome and Autistic Spectrum Disorders for children and adults in Hull including local strategic need and service provision. Further information is also available on Children with Special Educational Needs or Disabilities under Health Factors under Children and Young People, and further information can also be found on Neurodiversity under Health Factors within both Children and Young People and Adults.

This page contains information from the Office for Health Improvement & Disparities’ Fingertips. Information is taken ‘live’ from the site so uses the latest available data from Fingertips and displays it on this page. As a result, some comments on this page may relate to an earlier period of time until this page is next updated (see review dates at the end of this page).

Headlines

• In 2022/23, out of a school population of more than 44,300 pupils, 8,110 (18.3%) had some level of special educational need either on a Education, Health and Care Plan or with Special Educational Needs support. Whilst the percentage in Hull is higher than England and the region, there has been no real change in Hull in the percentage over the last two years whereas the percentages nationally and regionally have both increased.
• It is possible to break the numbers down for 2021/22, and there were 1,708 (3.9%) pupils who had a EHC plan and 6,175 (14.5%) who required SEN support. Overall, there were 942 pupils who had either a specific learning disability or a severe learning disability, 1,203 who had a moderate learning disability and 275 pupils had autistic spectrum disorder.
• Across all ages, in 2023/24, there were 2,171 people registered with Hull GPs who had a learning disability. This equates to 0.7% of all registered patients, compared to 0.6% for England. There was a statistically significant association between the prevalence and deprivation. Practices serving the patients living in the most deprived areas of Hull had a higher prevalence of diagnosed learning disabilities than those practices serving patients living in the least deprived areas of Hull.
• In 2019/20, there were 795 adults aged 18+ years with learning disabilities in receipt of long-term support from the local authority – the corresponding rates are 3.93 per 1,000 adults for the city, compared to 3.46 in England.
• Fewer of these patients registered with Hull GPs (43%) receive support from the local authority compared to England (50%).
• Three-quarters of supported working-age adults with a learning disability in Hull were living in settled accommodation, but less than 1% were in paid employment.

The Population Affected – Why Is It Important?

There are systems in place to identify children with a learning disability in school, and approaches to their education can be modified to maximise educational attainment. As indicated, there are varying degrees of learning disability and definitions used, accordingly different data sources and models often produce quite different estimates.

Following the Children and Families Act 2014, there are two levels of Special Educational Needs (SEN) provision in schools. Children and young people (under the age of 25 years) who have SEN may have an Education, Health and Care (EHC) plan, developed by all professionals and the family working together, to address all needs that a child or young person has within education, health and care. An EHC plan is the highest level of SEN provision. Children with a learning disability assessment should have an EHC plan.

Lower levels of SEN are addressed by pupils being in receipt of SEN Support. Under the Children and Families Act 2014, all pupils with SEN must have an identified primary need.

The diagnosed prevalence of learning disabilities can be examined from data collected as part of the Quality and Outcomes Framework within primary care. Quality of care indicators are also included, and it means that patients diagnosed with learning disabilities should have annual reviews at their GP practice. Local analysis of the QOF data has been completed with prevalence calculated for each GP practice and Primary Care Network group.

The National Institute of Health and Care Excellence (NICE) states that a learning disability is generally defined by three core criteria: lower intellectual ability, reduced social skills or ‘adaptive’ functioning difficulties appearing before adulthood.

The World Health Organisation classifies the disability as:

• Mild – Likely to result in some learning difficulties in school. Many adults will be able to work and maintain good social relationships.
• Moderate – Likely to result in marked developmental delays. Adults will need varying degree of support to live and work in the community.
• Severe – Likely to result in continuous need for support.
• Profound – Results in severe limitation in self-care, communication, and mobility.

A child with a specific learning difficulty is as able as any other child, except in one or two areas of their learning. For instance, they may find it difficult to recognise letters, or to cope with numbers.

The Hull Picture

Pupils with Special Educational Needs

The Office for Health Improvement & Disparities’ Fingertips presents information on the percentage of school age children on EHC Plans or requiring SEN support.

The percentage in Hull is only one percentage point higher than England (18.3% versus 17.3%) for the 2022/23 school year. The percentage in Hull is among the highest across the region.

The total percentage on EHC plans or SEN support decreased between 2015/16 to 2016/17 from 17.3% to 16.7%, but has subsequently increased to 18.4% in 2020/21. Since 2020/21, the percentage in Hull has remained relatively constant. In contrast, the percentage across England and across the region has increased over time including increases in the last two years.

For 2022/23, there were 8,110 children in Hull with special educational needs (on EHC plans or requiring SEN support).

It is possible to break this down into SEN support and EHC plans from local data. In 2021, overall 18.4% (7,883) of the city’s school population had some level of SEN, of which 3.9% (1,708) had an EHC plan and 14.5% (6,175) were in receipt of SEN Support. Across the SEN Support cohort, 942 pupils had either a specific learning difficulty or a severe learning difficulty, a further 1,203 pupils had a moderate learning difficulty as their primary need, and 275 pupils had autistic spectrum disorder. Based on the primary need of children with EHC plans, 382 had specific learning difficulty, severe learning difficulty or profound and multiple learning difficulty, a further 75 children and young people had moderate learning difficulty, and 366 had autistic spectrum disorder.

Further information relating to Children with Special Educational Needs or Disabilities can be found under Health Factors under Children and Young People, and in the most recent Joint Needs Assessment for Children and Young People with Special Educational Needs and Disabilities.

Diagnosed Prevalence of Learning Disability Among Patients Registered with Hull GPs

The Office for Health Improvement & Disparities’ Fingertips gives information on the prevalence of diagnosed learning disability from the Quality and Outcomes Framework so represents the percentage of patients who are registers with a GP in Hull and have a learning disability.

The sub Integrated Care Board areas which include Hull are within the Humber and North Yorkshire Integrated Care Board. In Fingertips, the sub-ICB area referenced by 03F relates to Hull (see Integrated Care Board for the codes relating to the other local sub-ICB areas).

In 2023/24, there were 2,171 patients registered with Hull GPs with diagnosed learning disability that was recorded within their GP records representing 0.7% of Hull’s registered patient population which was marginally higher than England at 0.6%.

The percentages have increased in Hull between 2014/15 and 2022/23 although the majority of the increase occurred between 2014/15 and 2017/18 whilst case finding occurred for this newly introduced indicator. There has only been a relatively small increase in Hull and England since 2017/18.

There was a statistically significant association between average deprivation score of registered patients (based on the Index of Multiple Deprivation 2019) and the prevalence of diagnosed learning disabilities across the 28 practices in Hull for 2023/24. The prevalence was 0.6% among practices serving the patients living in the least deprived areas of Hull compared to 0.8% among practices serving the patients living in the most deprived areas of Hull. For every increase in the deprivation score of 10 units, the prevalence of learning disabilities increased by 0.1 percentage points. Further analysis of diagnosed disease by the average deprivation score of practice patients is given within Local Analysis of Quality and Outcomes Framework Data.

There was no statistically significant association between the prevalence of diagnosed learning disabilities and the average age of registered patients across the 28 practices.

Receiving Long-Term Support from Local Authority

Information is also presented on the number of adults (18+ years) with a learning disability receiving long-term support from local authorities. During 2019/20, 43% of people on the GP learning disability register in Hull received long-term support from the local authority which was lower than England (50%).

Whilst the rate of these adults who receiving long-term support from local authorities has decreased over time from 2015/16 and 2016/17, the rate has been steady at around 43% for the last three years to 2019/20.

The percentages receiving local authority care will differ from area to area depending on case finding and better recording, potential differences in definitions of learning disability and its severity as well as differences in service provision and the help that is offered and available from others such as the voluntary sector.

The Office for Health Improvement & Disparities’ Fingertips also gives the rate of adults with learning disabilities who receive long-term support from the local authority (per 1,000 population) as well as the percentage of supported adults receiving direct payments.

The numbers receiving long-term support from the local authority differ from the numbers receiving long-term support from the local authority quoted above from the Quality and Outcomes Framework from the GP disease registers. The information from the Quality and Outcomes Framework give the percentages receiving long-term support out of the total numbers diagnosed / recorded on the GP disease register for learning disabilities and is expressed as a percentage. Whereas the numbers receiving long-term support for the indicator below represent the numbers receiving support out of the total population of Hull expressed as a rate per 1,000 population aged 18+ years.

Over 25,000 patients who are registered with Hull GPs who live in East Riding of Yorkshire, and any of these patients will learning disabilities will be included within the Quality and Outcomes Framework indicator above for Hull whereas the numbers below are based on the resident population estimates for Hull.

For 2019/20, there were 3.9 adults aged 18+ years with learning disabilities per 1,000 population who were receiving long-term support from the local authority in Hull which was higher than England (3.5). For 2019/20, a lower percentage of these supported adults were receiving direct payments for their care in Hull compared to England.

The rate of adults with learning disabilities receiving long-term support from the local authority has been increasing over time in Hull most notably in the last two years.

The percentage of supported adults with a learning disability who were receiving direct payments for their care and support has been relatively unchanged in the last three years 2017/18 to 2019/20 with around one-quarter receiving direct payments.

Safeguarding Enquiries

Information is also presented on the number of adults (18+ years) with a learning disability involved in Section 42 safeguarding enquiries (per 1,000 people on the GP learning disability register). The rate for 2018/19 in Hull at 48 safeguarding enquiries per 1,000 people on the GP learning disability register was only slightly lower than England.

However, the rate has increased over time in Hull from 14 per 1,000 population in 2015/16 to around 29 for 2016/17 and 2017/18, before increasing to 48 per 1,000 population in 2018/19.

People with Learning Disabilities in Settled Accommodation

Fingertips also provides information on the percentages of people with learning disabilities who are in settled accommodation. In 2019/20, the percentages in settled accommodation was slightly lower in Hull compared to England.

The percentages of adults with learning disabilities in settled accommodation has been increased marginally over time in Hull.

People with Learning Disabilities in Paid Employment

Fingertips also provides information on the percentages of people with learning disabilities who are in paid employment. If numbers are too low then the percentages are not presented.

For 2022/23, there is a very large gap between the employment rate among those with a learning disability and the overall employment rate. For 2022/23, the overall employment rate was 71.5% and with 0.4% of people with a learning disability employment in Hull, this equates to a gap of 71.1 percentage points.

The overall employment rate has been increasing with the exception between 2019/20 and 2021/22 likely associated with the COVID-19 pandemic and the higher percentages of people aged 50+ years deciding to retire from the work. However, the inequalities gap in employment among people with learning disabilities has also been increasing in Hull with only very small numbers of people with learning disabilities in employment with fewer people with a learning disability being employed in Hull.

Only three individuals who are in receipt of long-term support for a learning disability were recorded as being employed in 2022/23 in Hull.

Current Estimates and Future Projections of Number of People with a Learning Disability in Hull

The Projecting Adult Needs and Service Information (PANSI) and the Projecting Older People Population Information Service (POPPI) provide current estimates and future projections at local authority level of the number of people with different health needs.

The models use estimates from national surveys and research and apply these models to local populations. Different prevalence estimates are used for age groups and gender. Although, for many conditions, there is an increased prevalence in populations with high levels of deprivation, in most models deprivation is not taken into consideration. Thus, in many cases, estimates for Hull are likely to be low due to high levels of deprivation.

As there are four measures under learning disability that are the same for both PANSI and POPPI the information has been combined into a single table. Additional PANSI tables are given below for those aged 18 to 64 years only.

Further definitions are available from www.pansi.org.uk and www.poppi.org.uk.

PANSI estimate that around 4,000 people in Hull aged 18 to 64 years have a learning disability and this will remain relatively unchanged in the future. POPPI estimate that there are over 800 people with a learning disability in Hull aged 65+ years, and that this will increase to just over 1,000 by 2040.

Age	2023	2025	2030	2035	2040
18-24	748	763	851	864	806
25-34	1,031	998	929	964	1,038
35-44	829	855	882	840	785
45-54	679	661	652	710	736
55-64	702	697	646	580	573
65-74	484	497	548	562	526
75-84	282	295	321	338	381
85+	91	91	94	121	132
Total aged 18+	4,846	4,858	4,923	4,980	4,978

PANSI estimate that there are around 900 people in Hull aged 18 to 64 years who have a moderate or severe learning disability, and again that this will remain relatively unchanged in the future. POPPI estimate that there are just over 100 people with a moderate or severe learning disability living in Hull who are aged 65+ years, and that this will increase slightly over time.

Age	2023	2025	2030	2035	2040
18-24	174	178	200	204	192
25-34	222	215	200	207	223
35-44	208	215	222	212	198
45-54	152	149	149	163	169
55-64	152	150	139	124	124
65-74	79	81	89	91	85
75-84	29	31	33	35	39
85+	8	8	9	11	12
Total 18+	1,024	1,027	1,040	1,047	1,041

PANSI estimate that there are around 245 people in Hull aged 18-64 years who have a severe learning disability, and again that this will remain relatively unchanged in the future.

Age	2023	2025	2030	2035	2040
18-24	57	59	66	67	63
25-34	62	60	56	58	63
35-44	56	58	60	57	54
45-54	34	33	33	36	37
55-64	36	36	33	30	29
Total 18-64	245	245	248	249	246

PANSI estimate that there are around 360 people in Hull aged 18 to 64 years who have a learning disability who are living with a parent, and again that this will remain relatively unchanged in the future.

Age	2023	2025	2030	2035	2040
18-24	114	117	132	134	126
25-34	114	110	103	107	115
35-44	82	84	87	82	77
45-54	34	34	34	38	39
55-64	14	13	12	11	11
Total 18-64	358	359	368	372	368

PANSI estimate that there are around 100 people in Hull aged 18 to 64 years who have Down’s syndrome, and again that this will remain relatively unchanged in the future. POPPI estimates very low numbers living in Hull aged 65+ years with Down’s syndrome.

Age	2023	2025	2030	2035	2040
18-24	17	18	20	20	19
25-34	26	25	23	24	26
35-44	21	22	22	21	20
45-54	18	18	17	19	19
55-64	19	19	18	16	16
65+	1	2	2	2	2
Total 18+	103	103	102	102	101

PANSI estimate that there are around 70 people in Hull aged 18 to 64 years who have challenging behaviour, and again that this will remain relatively unchanged in the future.

Age	2023	2025	2030	2035	2040
18-24	12	13	14	14	14
25-34	19	18	17	17	19
35-44	15	16	16	15	14
45-54	13	13	12	13	14
55-64	14	14	13	11	11
Total 18-64	73	73	72	72	72

PANSI estimate that there are around 1,650 people in Hull aged 18 to 64 years who have autistic spectrum disorders, and again that this will remain relatively unchanged in the future. POPPI estimate that there are just under 400 people in Hull aged 65+ years who have autistic spectrum disorders, and that this will increase over time.

Age	2023	2025	2030	2035	2040
18-24	287	293	329	333	309
25-34	427	413	387	402	432
35-44	339	353	366	351	327
45-54	293	283	276	298	311
55-64	310	306	286	257	252
65-74	219	224	246	254	237
75+	168	176	192	210	234
Total 18+	2,044	2,048	2,080	2,106	2,103

Strategic Need and Service Provision

It is necessary to work with schools and early years settings to identify children and young people who need additional support. It is important that needs and specific circumstances are identified early in order for the most appropriate help and support to be provided.

A Joint Needs Assessment for Children and Young People with Special Educational Needs and Disabilities has been produced in Hull and this will inform local strategy.

Hull’s Early Help and Prevention Strategy sets out proposals to continue to build an integrated Early Help delivery model for children, young people and families in Hull and the vision of the Hull Children and Young People’s Plan gives a commitment to working together to make Hull an inspiring and enterprising city – safe and healthy to learn, play, work and live in. 

“We want all children, young people and their families to be able to make healthy lifestyle choices, be safe from harm and have the confidence to be ambitious and achieve their aspirations”.

The Early Help and Prevention strategy outlines an approach to ensure the collaboration and alignment of services, stating that preventative, targeted and tailored early help may be ‘early in life or at the earliest opportunity’. There are four thresholds of need with higher levels of targeted support given to children and families with additional or complex needs.

There is a need to work with partners to ensure that services are integrated, high quality and accessible in ways that offer people appropriate choices in order to improve health and wellbeing.  Working with partners to promote self-care, reablement or mutual support in community settings and, where appropriate, ensuring that the provision of specialist and adapted housing is fit for purpose will reduce reliance on residential or home care.

The period of transition for young people who have a learning difficulty into adulthood is known to be a time of considerable change and often uncertainty. There needs to be a clear transition pathway identified with partners across adult social care, children’s services, education and health in order to facilitate a smooth transition into adulthood.

There is also a need to explore meaningful employment opportunities for people with a learning disability as the figures for Hull are considerably lower than national and regional averages. Given the links between employment and wellbeing and between unemployment, poverty and impaired health, it could be reasonably expected that positive health and wellbeing outcomes will arise from improved employment opportunities.

People registered with Hull GPs who are diagnosed as having learning disabilities should be encouraged to attend annual reviews (generally within primary care) in order to receive the best on-going treatment and advice. Carers should be involved, where appropriate, and information should be provided in a format that is easily understood.

Progress has been made across the health and care system to transform care for people with learning disabilities and/or autism, who have a mental illness or whose behaviour challenges services, but it is recognised that much more needs to be done. Sir Stephen Bubb’s report, commissioned by NHS England, describes how to accelerate this transformation of care.

“The work to be taken forward through this programme will be wide-ranging and will be co-designed and co-produced in partnership with people with learning disabilities and/or autism, their families, clinicians, commissioners, providers, and other national organisations in the health and care system”.

Resources

Joint Needs Assessment for Children and Young People with Special Educational Needs and Disabilities, 2021/22.

The Office for Health Improvement & Disparities’ Fingertips. https://fingertips.phe.org.uk/

NHS Digital. Quality and Outcomes Framework. https://qof.digital.nhs.uk/

NHS Choices, What is a learning disability?  www.nhs.uk. 2013, NHS Choices: London.

Children Young People and Families Board, Hull Early Help and Priority Families Strategy 2015 – 2020. 2015, Hull City Council: Hull.

Association of Directors of Social Services, et al., Transforming care for people with learning disabilities – next steps. 2015, Association of Directors of Social Services, Care Quality Commission, Department of Health, Health Education England, Local Government Association and NHS England: London.

North East Lincolnshire Clinical Commissioning Group, et al., Learning Disability Transforming Care Partnership.  Humber Transforming Care Partnership Joint Transformation Plan 2016-2019. 2015, North East Lincolnshire Clinical Commissioning Group, Hull Clinical Commissioning Group, East Riding of Yorkshire Clinical Commissioning Group, North East Lincolnshire Council, Hull City Council, East Riding of Yorkshire Council: North East Lincolnshire, Hull and East Riding of Yorkshire.

Houlden, A., et al., Building the Right Support: A national plan to develop community services and close inpatient facilities for people with a learning disability and/or autism who display behaviour that challenges, including those with a mental health condition. 2015, Local Government Association, Directors of Adult Social Services, and NHS England: London.

Hull’s Early Help and Prevention Strategy 2021-25. https://www.hull.gov.uk/downloads/file/1726/Hull_Early_Help_and_Prevention_Strategy_2021_25.pdf

Updates

This page was last updated / checked on 8 October 2024.

This page is due to be updated / checked in March 2025.