Johan2 Speaker

Johan De Groef

Former president EAMHID and general manager of Zonnelied (Roosdaal, Belgium), an organisation for adults with ID. Psychoanalyst in private practice. Trainer and supervisor in the post-graduate course in Psychoanalytic Psychotherapy and the post-academic course in Mental Health in ID at the KU Leuven

BIOGRAPHY

Critical Factors to Promote Mental Health in ID: Looking for a Coherent and Inclusive Approach Against Fragmentation and Splitting at Different Organisational Level

 
Our globalised multicultural society is characterised by changeability, diversity, and uncertainty. Ours is a predominantly neoliberal society (Verhaeghe, 2015) assessing everything and everyone from a business and market paradigm. With their subjacent views on man and society, these developments provide in a certain way and to a certain extent the foundations for a particular way of speaking and thinking, a certain practice vis-à-vis persons with ID.

Disability care has undergone a paradigm shift over the last fifty years, from a medical paradigm to a citizenship paradigm. A person with ID no longer belongs in psychiatric care: People with ID are now fully-fledged citizens. Earlier, we strove to normalise and integrate “different” persons; today the guiding principle is inclusion. These societal tendencies coincide with scientific and organisational developments such as Quality of Life, a socio-ecological approach of disability, “bespoke” assistance and need-oriented care.

Mental healthcare knows a similar evolution: societalisation, de-institutionalisation, flexibilisation and marketisation become common practice. Both mental healthcare and care for the elderly–especially the demented–show a paradigm shift. Once the medical discourse has reached its limits, many all-important questions remain unanswered for those struggling with complex and lifelong problems. The Quality of Life approach–the Ter Horst orthopedagogic adage of restoration of ordinary life–gains full significance in these factual domains of “disability” in the broad sense of the term.

What do these evolutions entail for persons with mental health problems in ID? Our yearlong experience with these people in Belgium and Luxemburg allows us to identify some problematic phenomena–viz. fragmentation and splitting–that impose a(n) (ideology-)critical attitude towards the dominant discourse and its guiding principles. Our experience imposes certain fundamental reflections on language hygiene (Broekman, 1996): However important principles like inclusion and societalisation may be, they are not a self-evidence but a challenge, and they should not be wielded as slogans or dogmas. As guiding ethical principles take form, they need constant reformulation on a human scale.

I distinguish three domains in which the core problem of fragmentation and splitting occurs with all its ensuing iatrogenic effects:

1.       The macro-level of societal institutional care organisation through an objectivating legal and administrative logic;

2.       the meso-level where this logic touches the intra- and intersubjective micro-terrain, which has a singular subjective logic of its own, entirely different from the macro-meso-level. I also call this the “factuality of life” level, which is in danger of being underestimated and colonised by the macro-meso-level’s discourse (Broekman, 1996);

3.       the way to rethink the transformational relation–the rephrasing–between the macro-meso-level and micro-terrain in a manner that sidesteps splitting and neglect?

 

1.       Legal and Administrative Organisation of Health Care: A Double Diagnosis

In our Western societies with all their historic national idiosyncrasies, the differentiation between mental health care and disability care has yielded a separate organisation of the latter. It has developed its own identity, different and separate from mental health care. They each fall under the jurisdiction of different ministries and administrations, and have their separate financing and regulations. They also use expertise and knowledge models from different faculties. They employ more or less numerous, differently trained staff. Both function according to their own (mutually exclusive?) discourse.

The “double diagnosis” in this context is a very meaningful artefact. I do not use the term to refer to a double diagnosis strictu sensu; I am referring to those persons who resort under both domains at the same time. It is not the clinical but the business logic (who foots the bill?) which becomes the final stumbling block through which these people fall between two organisational stools. Double diagnosis turns into an excuse for splitting and exclusion. A UFO (undefined frightening object) is created and no one knows what to do with it.

“Don’t split and fragment! Connect and link!” - This is the background necessary for understanding the genesis of EAMHID. The core question is: How does one create links in all possible “life spheres” between mental health and intellectual disability? The paradigm shift includes the premise that the person with ID is a citizen like you and I, and therefore not less susceptible to mental health problems.

Through the whole of the initiatives–care circuits, consultancy, outreach projects, knowledge centres–undertaken in different countries and at a different pace, one can discern a leitmotif of such elements which prove being decisive in rendering possible a “comprehensive” inclusive service providing:

-          Identifying a common research questioning.

-          Acknowledgement of the equality of identities, both with their own finalities.

-          Gathering knowledge about both discourses: speaking, thinking, acting, and developing the capacity to translate in both directions.

-          Gaining a shared responsibility for establishing an optimum cooperation between the existing services and creating additional services together where necessary. This implies a participatory policy.

-          The subsidiarity principle dictates a zonally organised and adjusted collaboration, taking into account incidence statistics, geographic spread, and presence of crucial service personnel from both sectors.

-          The correction of a mutualised service requires an inter-sector steering committee, which functions best alongside the stakeholder model (with the highest possible equal representation). This guarantees both the linking of mental health care and disability care with related sectors (education, employment, etc.), and the linking of theory/practice with research and with education/training, and, last but not least, the link with the users/patients representation is essential if one wants to remain coherent and inclusive.

-          This cooperation demands a structural approach, not an ad hoc, crisis-dictated one, but a long-term perspective with a reliable masterplan setting a real goal. It is here that the particularly committed service staff fulfilling core functions (observation, treatment, etc.) are of utmost importance.

-          Inclusive cooperation requires constant rebalancing of the relation between the generic and the categorical.

Eventually, those common concrete experiences with real, personal contact generating commitment concerning case-related questions are most efficient. In other words: We learn from the “denarcissising” experience of needing each other and from the “narcissising” experience that together we do succeed in creating the necessary forces to provide a service that is “good enough” (Winnicott), i.e. tuned to the needs of persons asking for them.


2.       Layered Realities: Colonisation of Life Factuality

The meso-level is where the interface and transformation must take place, from the objectivating macro-logic to the level of actual service, namely in the life-factual subjective and intersubjective context of the real individuals concerned. Here, the implied expertise, emotional stamina, availability and perseverance throughout every crisis, and reoccurrence of basal problems are of crucial importance. This asks of all concerned, especially professionals, a reflective approach enabling them to catch the specific central psychodynamics and socio-emotional development of a specific person with all subjectivities and details. The continuity of relations proves priceless here.

It is, moreover, crucially important that the intersubjective networks, the actual communities, are supported. The same linking principles as on the macro-meso-level–the revitalising “Cs”(see 4.)–operate here.


3.       Restoring Ordinary Life or the Transformation Towards the (Intra-)Subjective

What is examined, thought and diagnosed, in short the macro-meso-level, cannot simply be applied on the micro-level; mutual reduction must be avoided. Both levels follow their own logic (Broekman, 1996). An objectivating integrative diagnostic has to be rephrased in a case-related understanding of the particular “psychodynamics” in which the socio-emotional dynamics are active as well (Dòsen & De Groef, 2015). A function-oriented diagnostic (Vanheule, 2017) instead of a dysfunction-oriented one, together with an anthropopsychiatrically conceived psychopathology (Feys, 2009), may prove inspiring in this case. Such a rephrasing creates a link between the objectivating diagnostics and meaningful metaphors from stories about the person concerned, and acquires the qualities of a portrait. Surpassing the different jargons of the various disciplines and models has a transdisciplinary effect. It reformulates the case–in a contained manner, promoting dialogue–in everyday, concrete language and strong images that speak for themselves for all those concerned. The institutional middle staff play an eminently crucial role in this contained rephrasing.


4.       The Vitalising Power of the “C”


All the crucial factors from the different domains can be clustered as follows:

-          Contact, continuity and circularity;

-          coherence, consecutive consistency;

-          implied commitment and control;

-          comprehensive containment.

To the extent to which the implementations of these “Cs” misfire or fail, one may expect splitting and fragmentation, with all the pathological consequences for all those concerned.


References

Broekman, J. (1996). Intertwinements of law and medicine. Identity in social context. Leuven Law Series Nr. 7, Leuven University Press.

Dosen, A. & De  Groef, J. (2015). What is normal behaviour in persons with developmental disabilities? Advances in Mental Health and Intellectual Disabilities, 9(5).

Feys, J.L. (2009). L’anthropopsychiatrie de Jacques Schotte. Une introduction. Hermann Editeurs, Paris.

Vanheule, S. (2017). Psychiatric diagnosis revisited: From DSM to clinical case formulation. Palgrave Springer Int. Publications.

Verhaeghe, P. (2015). What about me? The struggle for identity in a market-based society. Scribe, Mellbourne-London.