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Learning disabilities

Leicester Joint Strategic Needs Assessment (JSNA). Health and social care needs associated with learning disabilities, 2016.

Learning disabilities are lifelong conditions characterised by cognitive impairment.

In many cases no specific cause of disability can be determined. When causes are identified they are usually genetic, environmental or traumatic in origin.

Autistic spectrum disorders are commonly associated with learning disabilities. These are developmental and are characterised by difficulties in social interaction, communication and imagination. About half of people with severe learning disabilities have some kind of autistic spectrum disorder.

Prevalence of learning disability may be linked to certain demographic groups.

Who’s at risk and why?

As there is no way to detect the majority of infants with a learning disability at birth, it is difficult accurately to calculate the incidence (the annual number of new cases) of learning disabilities. One estimate of cumulative incidence for severe learning disabilities was given as 4.3 per 100 live births.

Estimates also vary as to the total number of people with learning disabilities. A critical review found that the prevalence of learning disabilities varied from 2 to 85 per 1,000, with an average of 3.8 per 1,000 for severe learning disabilities and 34 per 1,000 for mild learning disabilities. So the real figure is probably 3-4 per 1,000 for severe and 34 per 1,000 for mild learning disabilities.

More males are born with learning disabilities, though the proportions change with age, as females are more likely to live longer. Also there is some evidence of slightly higher prevalence rates amongst some Black and Minority Ethnic (BME) groups, and this includes South Asian groups in the UK.

The policy direction for meeting learning disability health needs is underpinned by a commitment to justice and social inclusion, focusing on increasing community based care and reducing variations in care outcomes.

The level of need in the population

As of March 2015, 1,992 people are recorded with learning disabilities, by age group, from a registered General Practice population of 381,000 in Leicester. It shows significantly higher proportions of people on the learning disability register aged 15-19 and between 40 and 59 and significantly lower proportions of people aged over 75 years.

With regard to area of residence, a review of the University of Leicester register in 2010 found that people with learning disabilities are resident all over Leicester. A review of the learning disability registrations by ethnic background found that there was a significantly higher rate of learning disability in people from White/White British ethnic backgrounds than any other ethnic group.

The frequency of most common medical conditions is similar for people with learning disabilities and the general population. However, there is increased frequency of thyroid disorders, non-ischaemic congenital heart disease and sensory impairment, among people with learning disabilities. People with learning disabilities have lower levels of arthritis and back pain compared to the general population, and fewer natural teeth.

Life expectancy of people with learning disabilities is increasing, but is lower than the general population. It diminishes with severity of impairment.

The leading cause of death in a London based study was respiratory disease (52% of cases compared with 15% in the general population). There may be issues relating to sub-optimal treatment and poor diagnosis.

Current services in relation to need

There are supportive services for people with learning disabilities around personalisation, accommodation, healthcare, employment, transition from child to adult care and carers.

People with a learning disability receiving support from adult social care have been offered the opportunity to have a Personal Budget since 2007.

In 2014-15, 39.2% of all people eligible for direct payments received a service. In the same period, 24.4% of carers also received a direct payment. The total number of Direct Payments in Adult Social Care for people aged 18 to 64 years, in 2014/15, was 1,103. This is 57.4% of all support packages. For learning disabilities this slightly decreases to 55.8%. Service users buy a range of different services using direct payments.

A settled home is crucial for good health. People with learning disabilities are less likely to be homeowners and more likely to live in places over which they have no control. A key national performance indicator is the proportion of adults age 18 to 64 with a learning disability, who live in their own home or with their family.

In Leicester, this figure is 815 from a known total of 1,210; 67.4%. There is a range of supported living options across Leicester. Even though suitable affordable housing is available in Leicester, too many people with learning disabilities live in residential care settings and out-of-area placements.

The majority of secondary health services are provided by Leicester Partnership Trust with a 12 bed assessment and treatment unit at Glenfield Hospital, outpatients and community health teams and a short breaks service. GPs are required to carry out Annual Health Checks and produce Health Action Plans.

There are 95 people of working age (18-64) with a learning disability known to adult social care in paid employment. This is 7.7% of working-age, learning disabled people known to Adult Social Care.

The Learning Disability Self-Assessment Framework (SAF) shows that there is more to do in Leicester to develop pathways from Children’s to Adult services.

In Leicester, 1,752 carers have received an assessment in 2012/13, 194 of whom care for someone with a learning disability.

Projected services use and outcomes in 3-5 years and 5-10 years

The number of people aged 18-64 years with a learning disability in Leicester is predicted to increase from 5,375 to 5,434 between 2015 and 2025. Most will have a moderate learning disability.

Those with a severe learning disability are projected to increase only by 3 people. People with Down’s syndrome and challenging behaviour are not predicted to increase significantly. The total number of people with autism in Leicester is projected to increase from 2,178 to 2,224 by 2025.

The total number of older people (aged 65 years and over) with a learning disability is projected to increase from 830 to 1,058 between 2015 and 2025. Most will have a mild learning disability; those with a moderate or severe learning disability are projected to increase from 112 to 143 people in the period. The total number of older people with autism in Leicester is projected to increase from 368 to 477 by 2025.

Unmet needs and service gaps

There is a need to ensure that more people with learning disabilities, and their carers, have access to personal health budgets and that they use them in a way that they choose.

There is a need for safe, secure housing for people with learning disabilities in the local community in Leicester.

Partnership work is required to:

  • Review health and social care funding arrangements to support early discharge from inpatient and are home settings; strengthen community outreach healthcare support services to support people in crisis.
  • Review levels of inpatient assessment and treatment as a result of strengthened community teams.
  • Ensure that out of county inpatient placements are necessary only in very exceptional circumstances.

There is a need to ensure that people with learning disabilities have enhanced opportunities to gain skills and support to get a job and remain employed.

There is a need to assess carers’ needs and make sure that they have opportunities for a variety of respite breaks.

Recommendations for consideration by commissioners

It is recommended that commissioners: note and act on the recommendations of the Needs Assessment on Learning disabilities in Leicester; implement the local strategy for commissioning services for people with learning disabilities and their carers; and refer to the Needs Assessment on Carers in Leicester.

Onward journeys