News & views Members' blogs Mental health and disabled people with Learning difficulties (LD) and Autism (ASC) Author: Simone Aspis (Changing Perspectives) I am a disabled person who is acting as an advocate for detained inpatients with LDs and Autism wanting to be released from psychiatric hospitals. I have over 20 years campaigning for disabled peoples’ human and civil rights, working for People 1st, United Kingdom’s Disabled Peoples Council and Alliance for Inclusive Education and Not Dead Yet. [email protected] Prevalence of mental health conditions is much higher amongst disabled people with Learning difficulties (LD) and Autism (ASC) than the neuotypical population. It is estimated one third of people with LDs and ASC will have a mental health condition. Many of the mental health conditions which disabled people with LDs/ASC develop are often caused by a clash between their own and neurotypical peoplesbrains who are wired to follow cultural patterns of being, thinking and feeling and living in an nero-liberal society. Whilst NHS’s statistics show a steady decline of disabled people with LDs and ASC being detained under the MHA 1983 from 3500 to 2,510 between 2011-2016, however the trend is reversing. In 2011 young people made up 7.6% of the total of disabled people detained under the MHA but by 2017 this had risen to 13%. Many of these are people with learning difficulties or autism who are admitted for short-stays that then become long-stay placements as a result of Local Authorities and Clinical Commissioning Groups systematic failures of funding local education, health and social care services that would facilitate disabled individuals participation in their local mainstream education provision whilst living with their families. These figures do not included people with LDs/ASC with restrictions placed on their freedoms whilst living in institutionalised psychiatric and social care settings as a result of deprivation of liberty safeguard order issued under the Mental Capacity Act 2005. The Mental Health Act makes it so easy to allow the State to detain disabled people with LDs and ASC without ever needing a psychiatric diagnosis. All psychiatrists have to do is determine whether a Patient with LDs behaviour is of an abnormally aggressive nature or is considered as seriously irresponsible social misconduct and a risk to oneself or others when determining if a person’s mental disorder is sufficient enough to warrant compulsory hospital treatment. Many people with LDs/ASC present themselves as having abnormally aggressive behaviour as a result of no, lack or break-down of state-funded assistance. The law does not require the medical profession to consider the external causes but only the presentation of the person’s behaviour at the point of admission. What constitutes as abnormally aggressive behaviour or seriously irresponsible social conduct is undefined and therefore can mean anything and everything. Once a patient is detained, psychiatrists can administer appropriate treatment that is available for the patient. Unlike treatability test, the treatment does not need to have a therapeutic benefit for the patient. And therefore, appropriate treatment can mean anything and everything which often includes sedated medication involving very toxic anti-psychotic drugs. Medication has been licenced to “treat” or “control” certain mental health conditions and accompanying symptoms. However there is no licenced medication which exists for “treating” LDs/ASC and accompanying ways of being, thinking and feeling - And nor there should be! Disabled people with LD/ASC are more likely than the general population with mental health conditions to be on medication for the long-term. 17% of disabled people with LD/ASC are taking anti-psychotic drugs even though only 4% of the group have psychosis/Schizophrenia. Many disabled people with LDs/ASC are forcibly injected with highly toxic anti-psychotic drugs to treat anxiety, impulsivity, irritability and aggression arising from unmet needs associated with LD/ASC rather than Schizophrenia or other psychotic conditions. Many treatment plans centre around anti-psychotic medication could violate disabled individuals human rights as the drug’s side effects are very detrimental to the patient’s mental and physical health (including massive weight gain) whilst losing control over their body and mind, alters personality and interferes with personal identity and life-style. The psychiatric regime is rooted within the individualised and medical model of disability/mental disorder where its focus is on fixing, mending and curing the disabled person with LDs/ASC. When not medicated, inpatients will undertake a whole range of therapeutic activities that places emphasis on developing individual’s coping strategies and where possible to help the person minimise or reject their disability identity and their behavioural traits. The outcome is that the patient follows neuro-typical patterns of being, thinking and feeling. Patients become self-obsessed with analysing and reviewing their own behaviours with no allowance to how institution and other powerful forces impact on their wellbeing. Scrutiny does not end at the hospital gates, it continues whilst the patient is in the community where patient’s every move is assessed, monitored and reviewed and is used to determine their progress towards discharge and their freedom. Once detained, for thousands of disabled people they often do not see the light of day or enjoy the freedoms we take for granted for years and years on end because there is a prevailing incentive for responsible clinicians to retain patients on section whilst their institutions gain financially at their patient’s misery. The law needs to be changed There is so much injustice; non-disabled peoples’ ways of being and life-styles and associated behaviourare afforded protection in law. Sportspeople taking part in pursuitswhich would be deemed to be abnormally aggressive or is seriously irresponsible social misconduct and of risk causing harm to others such as boxing, whistling and licenced stunt peoplewould not find themselves’ falling under the Mental Health Act provisions. Further, non-disabled people would only find themselves in the dock if the crown can prove that the intention of unwanted or offensive touching is to cause victim harm under the Offenses against the Persons Act’s provisions such as battery and assault. However, for many disabled people with LDs and ASC using physical “force” is their form of communication usually with their families, friends and staff to seek attention and have their needs met or move around freely in their environment; rarely such touching is used with the intention of harming others. Whilst non-disabled people are afforded protection governing their standard of behavior, this is not the case for disabled people with LDs and ASC. Their behavior does not need to be a threat or cause of actual harm to be banged up in a secure hospital. Mental Health Act Review The remit of the Mental Health Act review is very disappointing. I was surprised that the terms of reference do not cover the overuse and abuse of sectioning disabled people with LDs/ASC because of the wide interpretation of Learning Disabilities provisions in the MHA 1983. And once sectioned, the difficulties faced in challenging what constitutes as appropriate treatment and so called therapeutic programmes, often leading to many years of incarceration. Advocating for changes and release is often impossible if the independent mental health advocates are unable to provide the level and type of assistance which many disabled individuals with LDs/ASC require to uphold their civil and human rights. Even when ready for discharge, securing appropriate accommodation with care package can be an uphill battle - too often people are stuck in hospital waiting for a decent home with a care package near loved ones and social network. Broadly speaking I want the MHA review to Include disabled people with LDs/Autism within their remit of the review Review and replace the Act with legal provisions so they are compatible with disabled peoples UNCRPD human rights standards. Consider whether the existence of ATUs is perpetrating their use, as long as these institutions exist, they will be used. Clear legal protections for disabled people with “challenging behaviour” connected to their impairments from being sentenced, incarcerated in prison or mental health hospitals. The role and investment that inclusive education and well-coordinated multi-disciplinary services have in keeping families together that prevent segregation and institutionalisation of disabled people with LDs/ASC. The Care Act must promote disabled peoples human rights to independent living. All these practical suggestions have been supported by the UN Convention for Persons with Disabilities Committee who made it unequivocally clear in their observations and recommendations around the UK’s implementation of the UNCRPD that compulsory treatment of disabled people and the use of drugs as a form of chemical constraint is a violation of their human rights. And that the law around education and care must be revised to support disabled peoples human rights to inclusive education and independent living, a number of the pillars of independent living which will keep people out of oppressive institutionalised care.