"People with intellectual disabilities have the same mental health problems as the rest of the population, but they manifest themselves differently."

“We always say that mental health is the Cinderella of healthcare in general, due to a lack of resources, but intellectual disability is the Cinderella of all Cinderellas: people with intellectual disabilities have been, for many years, an invisible population, both in the training of different healthcare disciplines and in political will. If professionals are not trained in the needs and characteristics of this population in relation to mental health, they become invisible because there is no capacity for specific detection, diagnosis, and treatment due to a lack of awareness . If you don't train, you don't see them. Turning this situation around is what we tried to address in the programs we launched more than thirty years ago with the Department of Health.”

"People with intellectual disabilities can have the same problems as anyone else. We see depression, anxiety disorders, psychotic disorders, obsessive-compulsive disorders, and so on. In any case, changes have occurred. Previously, in institutionalized populations, it was rare to see problems with drug and alcohol addiction, but as this population becomes more integrated into society, these problems have been increasing because the risk factors for this population are becoming more and more similar to those of the general population."

People with intellectual disabilities and mental health problems

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Although the disorders are the same, there are marked differences in how they manifest, in the symptoms. For example, in people with intellectual disabilities and depression, we observe manifestations that we don't see in people without intellectual disabilities, such as behavioral problems (aggressive behavior) or self-harm. Or, a person may even withdraw into themselves and appear to have no problems, but they are not functioning well enough in a work or educational setting due to a mental health issue. Adequate training on mental health problems in people with intellectual disabilities is one of the biggest challenges we face. In training programs, for example, in medicine, the time dedicated to intellectual disability is almost nonexistent, so how are we going to diagnose something that no one has taught us about?

"The challenges are many. For example, how do we train the teams in services that serve the general population or the population with mental health problems to also serve these individuals? How do we create specific services to address mental health problems in people with intellectual disabilities? How do we connect the healthcare system with the social, community, and judicial systems to meet unmet needs in this population?"

Every social challenge must be elevated to a political priority. This population has not been sufficiently valued from a political standpoint because they lack a voice. Fortunately, some regions, such as Catalonia, have focused particularly on addressing the needs of this population. Since the 1990s, the Catalan Department of Health, the Department of Social Rights, and the Parliament of Catalonia have prioritized improving the treatment of people with intellectual disabilities and developmental disorders. This has also been the case with individuals with borderline intellectual functioning, a population whose IQ falls at the lower end of what the World Health Organization considers normal. These individuals often face significant challenges with the legal system due to difficulties understanding social rules, and they struggle in educational and professional settings. Therefore, it is essential to focus on this population as well.

“Guaranteeing rights is about the concept of ‘Nothing for us without us’ applied to the entire field of disability. Understanding their needs, opinions, and priorities is critical to creating any model.”

Today, if we don't take into account the people who have the health problem, whatever it may be, we cannot develop practical solutions because we need the involvement of the people we care for, their families, and the entire caregiving environment."

"The reference model would be a comprehensive care system from a horizontal perspective, meaning with an integration of social, health, and justice services; from a vertical perspective, where there is a line of continuity between the professional teams providing care, the family, the person receiving care, and the planner; and from a longitudinal perspective, with a care system that takes into account the person's needs from birth to death. This vision is what is being developed in the Care Model for people with intellectual disabilities/intellectual developmental disorders and mental health problems, within the framework of the Strategic Mental Health Plan of Sant Joan de Déu in Catalonia."

About 12 years ago, the WHO expressed interest in creating an atlas of care for intellectual disability worldwide, and this highlighted the difficulty of reaching a consensus on a common model that would work globally.

There is, for example, an imbalance between healthcare systems and those providing social care, education, or employment. In some countries, the former was well-functioning, but the latter were not, and vice versa. Furthermore, the conceptual framework for integrating systems is one thing, and its practical application to local and national realities is another. Sociodemographic realities are very different in countries like Colombia, Spain, or Finland, and we must apply these conceptual frameworks to the specific situations of each country and its sociodemographic environment. For example, there is a huge difference in the provision of social services between Northern European countries, which have a vast amount of resources compared to those in the South. In Northern European countries, there are almost twice as many people living alone compared to, for example, Spain. This creates completely different care needs. We must take this into account; we cannot simply transfer a model that works well in Helsinki to Gipuzkoa without adapting it to the new context, because we will fail.

"There are two fundamental themes promoted by the WHO: person-centered care and the development of universal systems, where there is general access to resources. These two programs must operate within an integrated model. One is not possible without the other, which is why this work, promoted by international organizations and public systems, is critical for us to achieve efficient and equitable systems. It is also true that the perceived level of integration does not always reflect the actual integration of services. Some countries believe their systems are highly integrated, but this is not the case, while in others, such as Spain, there is a perception that the systems are fragmented when they are actually more integrated than the services in countries like Germany, for example. This does not mean that more needs to be done; we must consolidate and strengthen this integration and take it a step further."

"We need everything. We need training where professionals work together, where psychology, nursing, and medicine develop multi-professional programs and work as a team. We need coordination systems and incentives to enhance that coordination; a policy that promotes all these integration systems as a common model."

Implementing these strategies requires having "special people," and I mean people who think about the system as a whole, not just how to do things within their own service. These are the profiles we know as bridgers and brokers , builders of relationships and knowledge, people capable of seeing connections and facilitating knowledge transfers between areas and services. We must understand, for example, that the knowledge we have about caring for the elderly can also be very important in caring for people with Down syndrome, and vice versa. It's a type of skill we don't value enough in personnel selection or in how we manage resources. And it's a scarce commodity. During my research on the integration system in Australia, I interviewed more than 300 service managers in the Sydney area, and fewer than 10 had a knowledge- broker perspective.

"We need data to know if what we are going to do is going in the right direction. From our multidisciplinary team in the Mental Health Policy Unit (originally at the University of Sydney and now at the University of Canberra) we have developed the Glocal Atlas Project , which includes a series of innovative tools to help decision-making in mental health policy and planning, such as service classification instruments, mental health care atlases and algorithmic decision and management systems that have been adopted and used in 35 countries around the world, and in Spain, especially in the Basque Country."

However, these apps are ten years behind in the field of intellectual disability. We don't have a standardized resource map like the one developed in Catalonia for mental health, on which we collaborated closely with Dr. Antoni Serrano's team at Sant Joan de Déu.

Intellectual disability is an area with fewer resources, and therefore it's often assumed that every available resource should be allocated to its care because the needs are so great. However, it's impossible to plan and provide quality care without evaluation. Extraordinary interventions can be implemented, but we won't know if they are truly effective, applicable, or sustainable without evaluation. It's like flying blind.