Learning disability is defined as the presence of:
- a significantly reduced ability to understand new or complex information, to learn new skills (impaired intelligence, often defined as an IQ level of 70 or less), with;
- a reduced ability to cope independently (impaired social functioning);
- which started before adulthood, with a lasting effect on development.
The term learning disability encompasses a very broad range of functioning. Further classification based on cognitive impairment is described by the ICD-10 diagnosis coding system, though in reality the severity/category of learning disability is rarely used outside of specialist learning disability services:
Source: WHO, 2007
Adults with learning disabilities are one of the most vulnerable groups in society, experiencing health inequalities, social exclusion and stigmatisation. In general, adults with learning disabilities have greater and more complex health needs than the general population, and often these needs are not identified or treated. Life expectancy of this group is shorter than the general population, though this has increased recently. In addition a number of national reports have highlighted that adults with learning disabilities often experience barriers to accessing healthcare services, and poor levels of care. Indeed, adults with learning disabilities are more likely to die from a preventable because than the general population. Patterns of health needs amongst adults with a learning disability are different to the general population, and therefore current programmes that target health inequalities may exclude this population group.
There are an estimated 6,086 adults with learning disabilities resident in Nottingham, of these 1,293 have moderate/severe learning disabilities and 99 have profound multiple learning disabilities.
Asperger syndrome is a condition on the autistic spectrum most commonly used to describe people with autism with average to above-average intellectual ability, and therefore individuals with Asperger syndrome generally will not be classified as having a learning disability. In the UK adults with Asperger syndrome are often excluded from accessing statutory health and social care services because they do not fit the perceived remit of having learning disability or mental health services.
This chapter focuses on Adults with Learning Disabilities and encompasses adults with autism and Asperger syndrome as these are not included in other chapters. Adults with physical disability and sensory impairment, Children with learning and physical disabilities and carers of adults with learning disabilities are considered in other chapters.
Key issues and gaps
- There is forecast to be an increase in the prevalence of adults with learning disabilities over the next 10-15 years, with the highest increase being amongst those with the most severe learning disabilities. There is also forecast to be an increase in the number of young people with learning disabilities entering transition that will require adult services.
- There is under-recording of adults with learning disabilities in primary care, especially in relation to adults with mild learning disabilities.
- Adults with learning disabilities in general suffer from poorer physical health than the general population, experiencing a shorter life expectancy and health inequalities.
- There has been a local review of use of general secondary health care services by adults with learning disabilities, providing a better picture of local need and demonstrating a higher use of services. A similar review of primary care data hasn’t been undertaken. Monitoring of delivery of the Learning Disabilities Direct Enhanced Service (DES) should ensure regular review of primary care data.
- There is still limited knowledge on the needs of people with learning disabilities from certain groups, such as within the Criminal Justice System, or from Black and Minority Ethnic Communities.
- Supported Living opportunities within the community are limited and not well understood or promoted.
- Further work is required to implement all actions from Six Lives and Healthcare for All.
- Nottingham City has the lowest proportion of adults with learning disability in employment and the second lowest in settled accommodation in the East Midlands.
- Adults with Asperger syndrome continue to be explicitly excluded from accessing statutory health and social care services because they do not fit the perceived remit of learning disability or mental health services. 65% of adults with Asperger syndrome have not received a Community Care Assessment. Adults with Asperger syndrome are also often excluded from supportive college/university education, housing or employment opportunities due to a lack of understanding or resources. Only 3% of adults with Asperger syndrome are living fully independent lives.
- There is concern that services for adults with learning disabilities may come under considerable pressure due to the current economic climate and budget deficit measures.
Recommendations for consideration by commissioners
- To continue to commission the Learning Disabilities DES and to ensure practices are offering high-quality health checks to all eligible patients, including consideration of alternative methods of delivery for those patients registered at a practice not signed up to the DES.
- To commission services in line with the expected increase in prevalence of adults with a learning disability over the next 10-15 years.
- To improve the quality of primary care learning disability registers, including improving the recording of people with mild learning disabilities on practice registers.
- To ensure all requirements of Six Lives, Healthcare for All and Improving the Health Nottingham City and Well-being of People with a Learning Disability are delivered by local providers and commissioners.
- To implement the action plan as required by the East Midlands performance and Self-assessment Framework to ensure continuing improvement in services for adults with learning disabilities.
- To stimulate the local market and provide more respite provision within local communities including the capability of meeting the needs of people with challenging behaviour and high-functioning autism and Asperger’s.
- To ensure sufficient access to dental services.
- To ensure appropriate weight management and exercise referral schemes are commissioned that are accessible to adults with learning disabilities.
- To reconfigure services so that there is a move towards provision in the community, including day services and supported housing.
- To increase the numbers of adults with learning disabilities in settled accommodation and employment.
- To better understand the demand and costs for specialist services to ensure that service provision is delivering value for money.
- To better understand the needs of people with Asperger syndrome and ensure access to mainstream and universal services, enhancing independent living.