If you were one of the 75 or so people attending the cross-border colloquium organised by Professors Roy McConkey from University of Ulster and Patricia Noonan Walsh, NDA Professor in Disability Studies, University College Dublin School of Psychology, then you experienced not only a day of information and exploration of possibilities, but a day that challenged statutory and non-statutory services to explore the capacities for doing it better in terms of direct service provision.
Professor Roy McConkey described the importance of physical, mental and social wellbeing. He stated that each day we do one of two things—build on our health or produce disease. He asked people to contemplate the word ‘disease’ as a ‘dis-ease’; configuring the continuum of poor health to good health juxtaposed by those who are not ill and those who are ill. Many nurses, doctors and health care professions are employed to address illness, but perhaps the focus nowadays, when the population as a whole enjoys better health, should be on the promotion of health and wellbeing.
Professor Patricia Noonan Walsh considered mental health and intellectual disability from the European perspective: ‘Health: the most important condition of the human condition’. Given that there are five million people with intellectual disability in Europe, the question of the visibility of people with ID in European health structures was considered by the Pomona Project. Those five million citizens in the EU’s 27 countries reflect diverse traditions in lifestyles and health care. Notwithstanding this, Pomona devised a survey tool and derived 18 health indicators from the 1252 participants in 14 countries, finding that three-quarters of the individuals with ID were living as ordinary citizens in the general population, mainly with family caregivers. Twenty-eight percent have the additional health problem of epilepsy; twenty-one percent have oral conditions and mouth pain, and fifty percent have the complication of obesity. (For more information on Pomona go to www.pomonaproject.org.)
Dr Philip Dodd from St Michael’s House gave an overview of the Irish context, pointing to the many deficits in mental health needs in terms of service provision—i.e. 56 people from Ireland are in outside-the-state placements; 105 people require urgent mental health and forensic services. From the National Intellectual Disability Database we know that 21% of people with ID require enhanced residential services due to behavioural/mental health problems. Despite the fact that 3227 receive high support residential placements due to individual needs, 59% of people in the high-support services are listed as being there due to challenging behaviour. Dr Dodd reviewed the Mental Health Act of 2001,(replacing legislation from 1886) which provides for involuntary admission to approved centres. Dr Dodd considered the HIQA standards and A Vision for Change”, with an implementation group of 2008, mapping existing services and looking at current service capacity. He concluded that the importance of attitudinal change is paramount in the current climate.
Dr David O’Hara from the Westchester Institute for Human Development in New York described innovations in accessible supports, demonstrating hands-on technology that has the capacity to transform the way services are provided. Dr O’Hara referred to the high level of co-morbidity, in that over 30% of individuals with ID also have mental health problems, 20% being challenging behaviour and 9% with autism. He stated that in the US there is a move from considering ‘mental health’ to ‘behavioural health’, including behaviour problems, autistic spectrum disorder, dementia, mood disorders etc. On a positive note he referred to the importance of the recovery model promoting self-determination and mental wellness. Sadly, many people with mental illness do die prematurely and would have a lifespan estimated to be 25 years less than the general population. Dr O’Hara referred to the Wagner McCall Institute in Portland, Oregon, and the 1996 Wagner Chronicle Care Model, quoting ‘My Health, my choice, my responsibility’ (see http://www.wihd.org/speprojects/pdf myhealthmychoice.pdf). Dr O’Hara referred to ‘virtual self-help groups’ and Able Link Technologies which he illustrated, concluding that improvements in technology have the net effect of improving assistive services for everyone—for example, a picture-based mobile phone makes instant messaging easier for non-readers, and for everyone. He referred to audio emails, pocket ACE, WebTrek Connect email, GeoTalk communicator, NutraNet—menu items, and th Quest, an accessible survey health tool to enable individuals to report. He concluded by stating that ‘it is only our imagination that will be the barrier to progress.’
Dr Ger Craddock from the Centre for Excellence in Universal Design of the National Disability Authority quoted that the most abundant resource in our schools is free— children—and he referred to the UN Convention Article 24 on the right to an inclusive education. He recalled other sources of a similar theme: the African proverb, ‘It takes a parish to raise a child’ and Patrick Kavanagh’s ‘Parochialism is universal: It deals with fundamentals’. Dr Craddock called for inclusiveness throughout the lifespan which, while minimising the impact of disability, maximising opportunities to participate.
Professor Sally Ann Cooper from Glasgow University spoke on recent developments in research and practice. She referred to ‘The Same as You?’ and a value-based, versus evidence-based, Scottish policy that had the impact of qualitatively improving peoples lives—calling for the closure of long-stay hospitals and promoting more individualised services. Professor Cooper lamented the lack of quality research. For example, in terms of epidemiology of self-injurious behaviour, studies vary in terms of the prevalence of SIB, some quoting the occurrence as low as 1.7% and other studies quoting it as high as 41% of the population with ID. Likewise, aggression is variously reported as low as 7% and as high as 51% of the ID population, with little reference to onset and the enduring nature of problem behaviour. She noted that in terms of effective disorders (e.g. depression/mania), 12% of people with ID are on anti-depressant medication and 26% are on mood stabilisers. Like many researchers Professor Cooper calls for more evidence-based research, concluding that good information makes for good decisions.
Bairbre Nic Aonghusa, Director of the Office for Disability and Mental Health in the Department of Health and Children, gave an overview of the function of that office which operates across four departments: Health and Children, Environment, Equality and Law Reform, and Education and Science. In a vibrant and encouraging way, Bairbre recalled that ‘every person with a disability would be supported to enable them to lead full and independent lives to participate in work and in society to the maximum of their potential’ (email@example.com; Hawkins House, Dublin 2).
The conference discussants included Eithne Fitzgerald, Head of Policy and Public Affairs at the NDA; Paddy McGowan, independent advocate; Brian O’Donnell from the National Federation of Voluntary Bodies, and Kathy O’Grady from the Sisters of Charity of Jesus & Mary Services. Remarks from Paddy McGowan ensured that everyone leaving this helpful and informative day had a responsibility to ensure that the knowledge and rhetoric would serve in some small way to improve the reality of the lives of people with intellectual disability in their mental health challenges.