DOCTRID conference – selected notes

I’m just back from the fourth DOCTRID conference¬† in Belfast. DOCTRID is the research arm of the Daughters of Charity. It funds and oversees research in the field of ID and autism by bringing experts from medicine, social science, education, computer science and engineering together. DOCTRID was established in 2010 as an international, interdisciplinary coalition of universities, service providers dedicated to improving the quality of life for people with Intellectual Disabilities (ID) and autism through research and technology.

Queen’s looked lovely in springtime, as always, and we had two lovely bright sunny days. This was a great background for two days of serious work. The aim of the conference was to create a better understanding between researchers, caregivers, healthcare providers and people with ID and ASD to bring practical changes to people’s lives, in particular through the use of Assistive Technology.

The challenges posed by living with intellectual disability and/or autism are very complex, and affect every area of the life of the affected person, and their families. Solutions must be equally broad, and need to be centered on the needs of the person.  DOCTRID IV aims to provide solutions to improve the lives of people with intellectual disability and autism. There are four themes in the conference, and for each, there was a presentation, and a workshop. The themes were :-

  • Quality of Life and Social Inclusion
  • Gaps and innovations in service delivery
  • Prevention and Epidemiology
  • Future and Assistive Technologies

DOCTRID participants talked about how research in technological, behavioural and social sciences could meet the needs of people with ID and ASD, caregivers and practitioners to improve communication, independence and access to education, and to inform policy an implementation around more effective service provision.

I was asked to talk as a respondent, with Jean Kerver from the US, to a talk on neuro-disability research by Bernard Dan, who is a pediatric neurologist from Brussels. He spoke very powerfully about the importance of tying together clinical observation, the experience of the patient and their family, with genetics, epidemiology, and animal models of disease. Jean added in the ideas of the importance of nutrition, and gave examples from her work on folic acid and iodine.

I spoke about information. This included information about what was being done, how the money was spent on services, what the outcome of these services was, and how accountable service providers were for service delivery. Too many services, both in the ID sector, and more widely, are run in the interests of the organization, rather than the clients. The second aspect of information was the dearth of evidence for many interventions in the lives of people with ID. For example, I have little doubt that ABA works for many children with ASD. However, there are very few trials of any kind of ABA, and none of these are very convincing. There is a real need for better evidence of the effectiveness of these interventions. The third use of information was a plea to take the voices, views, and interests of the clients much more seriously.

This last idea was inspired by, and ties into, the other presentation that really struck me. Jennifer Clegg is an Associate Professor and Honorary Consultant Clinical Psychologist, Faculty of Medicine & Health Sciences, at the University of Nottingham. Her work is broad, but she spoke at DOCTRID about the moral implications of moving people out from congregated settings.

In our society autonomy and individualism are highly prized. There are other ways of thinking about values, and relationships. These include placing a priority on relations. It is not necessarily the case that every person with intellectual disability wants to live, on their own, or with one or two others, in the wider community. Talking with people with ID, friendship, company, and relationships are (unsurprisingly) important. Any policy for moving people out of institutions needs to respect this, and to respect the needs, wishes and desires of the client, even if these are not to move out. This is not to justify the really poor practices of the past, and the present. There are several institutions providing warehousing for people with disabilities which need to be closed. Many people with ID wish to live independently, and should be accommodated, with services reconfigured as support services for them in community living. However, not every client fits this description, and not every client wants it. Part of autonomy is the right to refuse change offered to you.

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