The Mental Health of People with Intellectual Disability is a Human Rights issue

Evan Yacoub details the importance of appropriate responses to the issue of mental health for people with an intellectual disability…

  • Limitations in access to mental health services for people with intellectual disability affects  their dignity…This means that their human rights are affected.
  • RECOMMENDATION:  Dedicated teams of Mental health services for people with intellectual disability.

Catherine Dupre, an Associate Professor in Comparative Constitutional Law, wrote in 2011 in the Guardian newspaper that dignity “sits in the wider human rights landscape of the European convention on human rights (ECHR)”, and that there was a “sorry picture of how some of the most vulnerable members of society are treated when their need for support is at its greatest. Reliance on dignity has highlighted their vulnerability and imposed a positive duty to treat everyone in a human way that does not degrade or ignore their identity”.

I am of the view that that limitations in access to appropriate assessment and treatment of mental health problems in people with intellectual disability impacts on their dignity. This subsequently means that their human rights are infringed upon. Simon Wessely, President of the Royal College of Psychiatrists in the UK wrote that “Dignity…  is a word that stems from the Latin for worthiness. Easily violated, human dignity is complex. It is dependent upon our fundamental human rights being conferred upon us: the right to be spoken to with respect, the right to be clean, the right to make decisions, be spoken to politely, to live pain-free, eat nutritious and tasty food, the right to privacy and to social inclusion, and the right to independence”.

Poor mental health which is not assessed and treated in a timely manner can impact on how others perceive us, how much attention we can pay to our personal hygiene, our decision-making, our appetite, and our independence.

In 2006, ‘A vision for change’, a government white paper, reported that services were slow to respond to mental health needs for people with intellectual disability. The paper references a report by the Irish College of Psychiatrists which states that “mental health/psychiatric services for people with intellectual disabilities have not kept pace with …developments – they remain under-resourced and grossly underdeveloped in many Health Board areas in Ireland. Some counties have no psychiatric service at all for people with intellectual disabilities.

The white paper also states that “There are still people with intellectual disability and mental health problems who do not receive any service, particularly those with a mild intellectual disability. While there is ring-fenced funding for intellectual disability services, the funding for mental health services within this is not clearly identified. There are also a number of structural barriers that hinder access to mental health services for people with intellectual disability. For example, voluntary bodies do not operate within defined catchment areas and are not funded to provide a mental health service to all those with an intellectual disability who might need such a service. Therefore, individuals with intellectual disability and a mental health problem do not have the right of access to a mental health service that others in the population have”.

A vision for change made a number of important recommendations in this area, namely:

RECOMMENDATION 14.6: Mental health services for people with intellectual disability should be provided by a specialist mental health of intellectual disability (MHID) team that is catchment area-based. These services should be distinct and separate from, but closely linked to, the multidisciplinary teams in intellectual disability services who provide a health and social care service for people with intellectual disability.

RECOMMENDATION 14.7: The multidisciplinary MHID teams should be provided on the basis of two per 300,000 population for adults with intellectual disability.

The paper also stated that the following mental health professionals should comprise the core multidisciplinary team to deliver mental health services to adults with intellectual disability and a mental health problem:

  • one consultant psychiatrist
  • one doctor in training
  • two psychologists
  • two clinical nurse specialists (CNS) and registered nurses with specialist training
  • two social workers
  • one occupational therapist
  • administration support staff

11 years on, MHID teams as described by VFG are yet to become operational. Finally however, there are significant developments afoot. The HSE mental health division has appointed a project team to kick start the implementation of VFG guidance in this area. Key issues for consideration in this process are:

  • Mapping current service provision;
  • Building starter MHID Teams for catchment areas;
  • Clarify the clinical pathway in the context of
    • Referral criteria
    • Assessment process
    • Care plan
    • Discharge including communications required.

This specialist model is vital. In addition to its core function in assessing and treating mental health problems in a vulnerable subset of the population which impact directly on their dignity, the specialist nature of the teams will hopefully address:

  • The need for accurate diagnosis given atypical presentations in this population and communication issues which are frequent;
  • The need for appropriate multidisciplinary input given that mental illness, chronic behaviour problems and social communication issues can co-exist and prove difficult to disentangle;
  • The increased frequency of side effects in this group;
  • The increased frequency of coexisting epilepsy and other medical conditions;
  • Specific ethical Issues such as capacity and consent.

It is important therefore to note that whilst change has been slow to arrive, the future looks much brighter. The article seeks to highlight why this is especially important. This is not just about addressing the lack a service provision. This is about dignity, which as Simon Wessely argues, is where one’s pride, self-respect and happiness comes from.

EvanDr Evan Yacoub MBChB MRCPsych MSc., is a Consultant Psychiatrist for people with a learning disability, and Chair of the faculty of learning disability psychiatry at the College of Psychiatrists of Ireland.