My experiences working as a support worker for adults with intellectual disability, before starting medical school and alongside my studies, has given me valuable insight into the lives and experiences of the people that I supported.
In this role, I gained an appreciation of some of the challenges faced by people with intellectual disability, including the impact of stigma and healthcare inequalities. I also was able to appreciate the vital role that specialist community teams play in supporting people with intellectual disability to access mainstream services and in providing specialist support regarding issues such as challenging behaviour, communication difficulties and the management of physical health issues.
Before I continue, I would like to first define what an intellectual disability is.
An intellectual disability, also known as learning disability, is where a person has reduced intellectual ability (normally an IQ of less than 70) alongside experiencing difficulty with day-to-day life skills such as socialising, personal care and household tasks. Many different factors can impact on the development of the brain before birth or during early childhood, causing an intellectual disability. These include genetic disorders such as Down syndrome, complications during pregnancy and birth such as oxygen deprivation, and serious illness or brain injury during childhood.
In this blog, I would like to raise awareness of the stigma and inequalities faced by people with intellectual disability and highlight the vital importance of specialist services, including the role of intellectual disability psychiatrists.
I will first look at how attitudes towards people with intellectual disability and the services provided have changed throughout history in the UK. I will then focus on how people with intellectual disability are supported in the today and how this can move forward in the future.
Back in the Middle Ages, people with intellectual disability were supported in a way that was similar to today. The courts would offer support to the families if they were struggling to support their loved one due to financial problems, a family crisis or due to challenging or disruptive behaviour. They also provided support for people with intellectual disability to live more independently.
The industrial revolution triggered significant changes in how people with intellectual disability were viewed and treated in society. Before this, people with intellectual disability often worked alongside others in group cooperatives. However, during the industrial revolution there was a move towards individual wages and salaries. This change led people with intellectual disability to be perceived as a financial burden both on their families and on society in general.
At the beginning of the 1800s, small institutions were set up and run by volunteers where people with intellectual disability were trained to become ‘productive members of society’, with the aim of reintegration.
Later on in the 19th century, larger government funded institutions were set up with the aim of containing and segregating people with intellectual disability. It was believed at the time that people with intellectual disability needed to be sheltered from society to keep them safe, since they were viewed as being vulnerable. Since at the time intellectual disability was believed to be heritable, it was also argued that people with intellectual disability should be segregated from wider society to prevent intellectual disability from the condition becoming more prevalent. The photograph below was taken at Pennhurst State School in Philadelphia, which was an institution for people with intellectual disability.
At the beginning of the 20th century, the government formally recommended the segregation of people with intellectual disabilities in institutions, with the Mental Deficiency Act 1913 making it a legal requirement for local authorities to offer institutional care.
During the 1950s and 1960s, there were growing doubts about the appropriateness of institutional care, which triggered the gradual transition towards community-based care. A number of sociological studies considered the impact of institutions on child development. One of the most famous of which was the Brooklands Experiment, led by Professor Jack Tizard at the Maudsley Hospital in London where it was shown that children with intellectual disability living in a smaller home-like environment showed improved development of their social, emotional and verbal skills compared to children living in long-stay hospitals over a period of 2 years.
These doubts were compounded by a series of reports exposing poor conditions in institutions, the most famous of which was the enquiry into the poor conditions and treatment of patients at Ely Hospital in Wales, a long-stay institution for people with intellectual disability and mental illness. The photograph below is from an exhibition about Ely Hospital, organised by Mencap Cymru.
In 1971, the parliamentary white paper, ‘Better Services for the Mentally Handicapped’, recommended deinstitutionalisation in the UK, with an increase in community-based services. These were further reinforced in the 1979 Jay Report, which highlighted the need for community-based services led by local authorities which were in line with the principle of normalisation.
Normalisation was a concept first defined by Wolf Wolfensberger (shown in the photograph below) in 1972 which promoted the idea that people with intellectual disability should have the same rights as the general population. Wolfensberger argued that the ‘devaluing characteristics’ of disadvantaged groups were a result of being rejected by society and devalued.
Wolfensberger later redefined this as ‘social role valorisation’ which included the idea that increasing integration of people with intellectual disability in the community and therefore allowing people to have direct experiences with them would challenge negative stereotypes and lead attitudes towards people with intellectual disability to become more positive. Wolfensberger’s ideas contributed to the development of the social model of disability which is widely accepted today.
Over the last 50 years, deinstitutionalisation has led to the closure of long-stay hospitals and the development of specialist community services. ‘Valuing People: A new strategy for learning disability in the 21st century’, published in 2001, outlined the main principles of inclusion, choice, rights and independence for people with intellectual disability. This was later updated in 2009 with ‘Valuing people now: a new three-year strategy for people with learning disabilities’.
Key legislation has been developed in the last 20 years to protect the rights and liberty of people with intellectual disability and safeguard them from abuse and discrimination, including the Mental Capacity Act 2005 and Deprivation of Liberty Safeguards, The Equality Act 2010 and the Care Act 2014.
Specialist intellectual disability services are offered by a multidisciplinary team of health and social care professionals, including intellectual disability psychiatrists and nurses, clinical psychologists, and allied health professionals. Specialist services are there to provide support in a wide range of areas including mental health, communication, behavioural support, postural care and neurological disorders, including epilepsy and dementia.
Due to a range of biopsychosocial risk factors, mental illness is more common amongst people with intellectual disability compared to the general population and can have a profound impact on individuals with intellectual disability and their families.
People with intellectual disability may present with mental illness in a non-specific way, for example by becoming withdrawn; it is an interesting diagnostic challenge for intellectual disability psychiatrists to elicit whether a change in behaviour may be due to mental illness, a physical health problem or a change in that individual’s environment or routine.
The roles of intellectual disability psychiatrists include improving access to mainstream services by providing specialist advice regarding clinical management of physical and mental health conditions in people with intellectual disability, providing training for staff on intellectual disability, and by influencing service provision in management and leadership roles. Intellectual disability psychiatrists also work closely with specialists in collaborative care networks, for example, with neurologists to support patients with intellectual disability and complex epilepsy or with old age psychiatrists to support patients with intellectual disability and dementia.
Although there have been dramatic improvements in the quality of care and support provided for people with intellectual disability over recent decades, stigma regarding intellectual disability and autism is unfortunately still present in society today. This stigma continues to be reflected in healthcare inequalities faced by people with intellectual disability, inequities in the provision and funding of specialist intellectual disability services and shortages of staff providing specialist care for people with intellectual disability and autism, including intellectual disability psychiatrists and nurses.
The Transforming Care Programme, implemented in 2015, aims to ensure that people with intellectual disability are not inappropriately placed in long-stay hospitals and are instead supported in community settings.
Although this programme has a very important goal, the decreases in inpatient beds available for people with intellectual disability have unfortunately not yet been met by sufficient increased availability of appropriate community-based alternatives or wider support packages to allow people with intellectual disability who have more complex needs to live in the community. This is on a background of historical inequities where the provision of specialist services to meet the needs of people with intellectual disability have not been given the same priority as mainstream physical and mental health services.
The shortfalls in the provision of specialist services for people with intellectual disability as well as training for staff in mainstream services on supporting and making reasonable adjustments for people with intellectual disability mean that people with an intellectual disability still face significant healthcare inequalities. People with intellectual disability are more likely to experience poor mental health and more likely to die at an earlier age and from a preventable cause.
The ongoing COVID-19 pandemic has brought the healthcare inequalities faced by people with intellectual disability into stark focus. Data reported by the Care Quality Commission has shown a significant increase in the number of deaths of people with intellectual disability during the peak of the pandemic, with 386 deaths reported between the 10th of April and the 15th of May 2020 compared to 165 deaths in the same period last year. This is an increase of 134%.
Out of the 386 deaths reported, 206 were a result of either suspected or confirmed COVID-19. In addition to this, findings reported by the Office for National Statistics indicate that compared to those without a disability, individuals who have a disability are more worried about the impact of the pandemic on their wellbeing and daily life, and are more frequently reporting that the pandemic is causing their mental health to be worse, is causing them to feel lonely and a burden on other people.
The stigma against intellectual disability may potentially be contributing to difficulties in attracting staff to work in specialist intellectual disability and autism services, with shortages present in the numbers of specialist intellectual disability nurses, psychiatrists and allied health professionals.
Tackling stigma against people with intellectual disability and increasing the awareness of the importance of providing specialist health and social care services to meet the needs of this patient group is essential to keep making progress in how society supports and values people with intellectual disability.
As a medical student and support worker, I believe that good quality training for medical students and doctors on intellectual disability, including how to make reasonable adjustments, is essential in ensuring the provision of good quality care for patients with intellectual disability. I also feel that awareness needs to be raised regarding how rewarding, interesting and fulfilling a career specialising in intellectual disability can be to encourage recruitment into specialist services.
Special note from the editors: This is the eleventh (+ FINAL) blog of our series, The future of mental health as seen by the future leaders in mental health, written by the 2020 ‘Psych Stars.’ Selected by The Royal College of Psychiatrists, Psych Star ambassadors are a group of final year medical students awarded for their particular interest and commitment to psychiatry. During the year-long scheme as Psych Stars, students are nurtured in their interest in psychiatry through the assignment of mentors, by gaining access to learning resources and events, and by becoming part of a network of like-minded students. More information on the Psych Stars scheme can be read here. We have decided to invite each of the Psych Stars to write a blog on how they envision the future of mental health by choosing an area in which they are passionate. We have decided to run the series as a celebration of these student’s success and to provide an outlook for each of the awardees to share their passion. With a new blog published each Friday, the series will run over the next few months.
If you enjoyed today’s blog by Lucy, be sure to head over to InSPIre the Mind and check out the previous blogs in our Psych Star series covering topics such as compassion, the mind-body interaction, the future of child & adolescent psychiatry, gender inequality, global health, male mental health, neuropsychiatry, telepsychiatry, psychedelics, and primary prevention.