RideLondon 2024 - Plan Ahead for Road Closures

RideLondon-Essex 2024

Calling all Care Workers! Launch of the Essex Care Worker Survey

Complete the survey

New Safeguarding Portal

Individuals and professionals can now submit adult safeguarding referrals through a new online portal.

Safeguarding Portal
Essex County Council - Provider Hub
Skip to content
Text size:

Did you know?


Source: LeDeR  learning disability mortality review, 2020 

 

Today’s older people with learning disability are the first generation to survive beyond childhood and adulthood into older age….it is crucial that these additional years are as happy, healthy and fulfilling as possible.

Source: Growing Older: Improving Support for People with Learning Disabilities. 2013 

LeDeR is a service improvement programme for people with a learning disability and autistic people. Established in 2017 and funded by NHS England and NHS Improvement, it's the first of its kind.  

LeDeR works to: 

  • improve care for people with a learning disability and autistic people 
  • reduce health inequalities for people with a learning disability and autistic people 
  • prevent people with a learning disability and autistic people from early deaths 

Research has shown that on average, people with a learning disability and autistic people die earlier than the general public, and do not receive the same quality of care as people without a learning disability or who are not autistic. 

LeDeR reviews deaths of people with a learning disability and/or who are Autistic, to see where there are areas of learning, opportunities to improve, and examples of excellent practice. From reviews within Essex this information is then used to improve services for people living with a learning disability and autistic people. 

The Dept of Health commissioned the CIPOLD report (Confidential Inquiry into premature deaths of people with learning disabilities) which when published in March 2013 identified the lack of reasonable adjustments provided to people with a learning disability (especially in accessing clinic appointments and investigations) as a contributory factor in a number of avoidable deaths. They also found that 38% of people with a learning disability died from an avoidable cause, compared to 9% in a comparison population of people without a learning disability (Heslop et al. 2013, (Heslop et al., 2013). 

Following on from the CIPOLD report the LeDeR program was started in May 2015 and established a requirement that all deaths of people with a learning disability should be reported to LeDeR and potentially reviewed to ascertain whether the death could have been avoided, to identify any shortcomings in practice and make recommendations regarding health and social care practice and areas for improvement. 

There is limited data available with regard to deaths of people who are autistic but for the first-time since 2021, deaths of adults who have a diagnosis of autism but no learning disability will be included in the process. LeDeR reviews now take place, for all autistic people over the age of 18 who have been told by a doctor that they are autistic and have this written in their medical record. All reviews of people who are autistic without a learning disability will be focussed reviews initially to develop data and learning. This change will take place during 2021 not from 1 June 2021. 

Healthcare professionals have a legal duty to provide reasonable adjustments for disabled people (Public Health England, 2016). This can include providing easy-read information, avoiding medical jargon or longer appointment times. 

Autistic people see, hear and feel the world differently to other people. Autism varies widely and is often referred to as a spectrum condition, because of the range of ways it can impact on people and the different level of support they may need across their lives. 

This toolkit focusses on Autistic people who also have a learning disability, but it is pertinent to also consider the general impact of growing older if you are Autistic, as stated below, by Social Care Institute for Excellence (SCIE)  

Social Care Institute for Excellence 

Autism was not included in the main European or American classification of diseases manuals until the late 1970s and early 1980s, with Asperger syndrome included even later. Children were initially the subject of most diagnoses of autism. As a result, few people, who are now older, have a diagnosis of any autistic spectrum condition and gaining a diagnosis for older people can be hard, because it is difficult to draw up an accurate picture of early years’ development. Many older people with autism will therefore have inaccurate diagnoses or will be viewed as simply odd or eccentric. For some, their difficulties adapting to change are dismissed as a product of being older, and therefore ‘stuck in their ways’, or are attributed to mental health problems or dementia, which can lead to inappropriate treatment.  

There is also little research into the needs of older people with autism. Recent studies indicate that they are socially isolated and have difficulties sustaining employment and relationships. 

Diagnosing older people with autism is important, so that they can benefit as others do from the greater understanding and access to services that a diagnosis can bring. People face some key transitions as they age, such as retirement and bereavements, and it is important they receive appropriate support.  

Loss of carers 

A significant transition faced by many people with autism as they get older comes when their parent carers are no longer able to support them at home. Many autistic people continue to live at home with carers well into adulthood, and parent carers are therefore likely to be nearing and entering old age while still providing care to people with often very high needs. The potential for sudden breakdowns in caring arrangements is high, and too many people with autism may find themselves hurriedly placed in settings that may be expensive, distant, inappropriate, or all three. Other people may be left living at home without adequate support. This is a key cause for stress and concern for parents and carers as they approach older age.  

It is important, therefore, that careful planning, involving the person with autism and their family, takes place well in advance of a change to the family situation. This will help to address the concerns of both the autistic person and their Carers. Emergency plans, detailing what support will be put in place for someone if their care arrangements break down, can alleviate anxiety, and lessen the likelihood of an emergency residential placement. 

Accessing healthcare 

Older people who are autistic can experience difficulties with accessing healthcare and this can lead to avoiding healthcare until absolutely essential. Entering the healthcare system at the point of severe health decline can result in expensive nursing home placements or hospitalisations. People may also be less likely to ask for adaptations to their property or request help at home.  

SCIE Growing older with autism 

‘Health inequalities are the preventable, unfair and unjust differences in health status between groups, populations or individuals that arise from the unequal distribution of social, environmental and economic conditions within societies, which determine the risk of people getting ill, their ability to prevent sickness, or opportunities to take action and access treatment when ill health occurs.’

Source: Public Health England 2019

People with a learning disability with/without Autism, often have worse health than people without a learning disability and are more likely to experience a number of health conditions. The health inequalities faced by people with learning disabilities in the UK start early in life, and often result from barriers they face in accessing timely, appropriate and effective health care. 

Barriers to health equality- 

  • Patients not identified as having a learning disability 
  • Individual communication method not understood 
  • Staff having little understanding of learning disability and/or autism  
  • Failure to recognise that a person with learning disabilities is unwell  
  • Failure to make a correct diagnosis 
  • Anxiety or lack of confidence in people with a learning disability 
  • Lack of joint working between different care providers  
  • Not enough involvement allowed from carers/support staff  
  • Inadequate aftercare or follow up care 

Additional barriers for those who are also Autistic: 

  • bright, noisy settings 
  • Sensory overload leading to shut down in thought processes 
  • Hypersensitivity or hyposensitivity to sights, sounds, smells, tastes, touch, balance and body awareness 
  • Too much information causing stress, anxiety, withdrawal, distressed behaviours 
  • lack of awareness of Autism and the impact of this, among health professionals 
  • diagnostic overshadowing – everything being put down to a person’s autism 
  • difficulties in communicating – for example, explaining where the pain is and what it feels like  
  • poor awareness of autism in mental health services, which tend to have a recovery focus 
  • some health interventions require touch, which can distress some people with autism
  • hypo-sensitivities, which can make it difficult to identify if someone is in pain 

Following on from the Autism Act 2009, The government policy paper The national strategy for autistic children, young people and adults: 2012 to 2026’, list one of their commitments to improve health inequalities for autistic people as:  

‘...move forward with existing Long Term Plan commitments on reducing health inequalities, including trialling an autism health check, piloting hearing, sight and dental checks for children in residential schools and laying the foundation for improved recording of reasonable adjustments in patient records’ 

 

National Strategy for autistic children, young people and adults: 2021 to 2026 

More information on Sensory differences - National Autistic Society.  

A barrier that often affects people with any type of disability is ‘diagnostic overshadowing’.  

This is the term given to overlooking a physical illness because of presuming symptoms are part of the pre-existing sometimes mental health condition, thus missing the opportunity to screen for other physical disease.  

Diagnostic overshadowing increases the risk of further health complications and delay in accurate treatment.  

Diagnostic overshadowing is increasingly recognised as contributing to health inequalities experienced by the learning disability population. 

Essex County Council began the Meaningful Lives Matter (MLM) Ageing Well project in September 2019, recognising that people with Learning Disability with and without Autism, die earlier than the general population (average age of death is 60 years in Southend Essex and Thurrock (SET), and that they often experience early frailty.

As our local population ages, their needs will change and there may come a time where their primary need is no longer Learning Disabilities related, instead, it is age-related. 

A review of some people with a learning disability who are ageing has taken place, alongside a program of training to upskill the Provider Market, both to improve the quality of life of people with Learning Disabilities and to delay or reduce the development of age-related support needs. 

The focus has been on annual health checks, frailty, maximising independence regardless of age, integrated reviews and provider training, linking in to other related workstreams (Older People, Dementia, Personalisation, Carers etc) to ensure a joined-up approach across Essex County Council and an integrated approach with health. 

As a result of this work, tools, prompts and information have been collated into this Tool kit, to support Social Workers to be aware of the issues facing someone with a learning disability as they age so that this can be explored during the annual reviews. This will ensure that as the Person progresses towards ageing, they are well supported to have a good life that is both fulfilling and enriched. 

Remember that ageing with a learning disability can mean that the person ages much earlier or even later, than others in the population. Don’t let someone’s chronological age dictate your thoughts, observe what is happening developmentally to identify signs and symptoms of ageing to indicate whether you should be following the Ageing Well pathway as part of the review.   

It is the Essex County Council intention to have a list of accredited Service Providers who will be expected to provide evidence, against the list of agreed standards, of their competence to effectively support people with Learning Disabilities, as they age.

This Toolkit will help you as reviewers, ensure that everything is in place to support the person to age well but will also help to ensure that providers are working to achieve that aim.  

Last updated: 16/06/2022
Next Accreditation of Providers