By Jolijn Santegoeds, 9 December 2020
While millions of euros go to the pharmaceutical industry, people are stuck in institutions devoid of humanity. Their heightened risk to COVID19 contraction is defined by the fact that they are institutionalized and therefore exposed to a higher number of contacts, while their lives have been put on hold under terrible circumstances. This is at its core a social injustice. Yet the vaccine will not remedy this social injustice. The pre-existing human rights violations such as deprivation of liberty under horrible conditions will continue also after vaccination. What does it mean to save a life? It is time to step up to the next level, and take action to end institutionalization.
What if we would invest the same commitment to making the society safe and inclusive for all, and besides vaccination, also focus on deinstitutionalization, hygiene, healthy living, personal protection, and smart inclusive solutions? Politicians have shown it is still possible to travel with hygiene and protection measures, so why not make efforts for everyone’s freedom? Can we restyle the community, instead of detaining ‘the vulnerable’? Did the lockdown of institutions save lives, or did it mostly wreck lives? What if we will make limitless efforts for inclusion instead of exclusion? Can we do it better from here?
Broaden the approach: A social approach to the COVID19 emergency
Next to the medical model approach to COVID19, which currently entails waiting for the vaccine, there is also a social approach, aiming at safe inclusion and equality, leaving no one behind. Deinstitutionalization is the first step, and urgent policies should enable people to move out of institutions. Budgets and systems be ready for organizing community based support, relocate institutional resources to community based support, person centered, with personal assistance and budgets to enable independent living or family type care, in line with the person’s will and preferences, with equal opportunities.
The social model of COVID19 is also important when thinking about the right to say no to vaccination. E.g. What would happen if a person in an institution refuses the vaccination. Would that have reprisals to liberty, making it more or less a Community Treatment Order where liberty is conditional to medication? This also applies to staff who may face requirements of vaccination by their bosses.
In case of refusal, the alternative would probably be to cope in the way as prior to the vaccine, and e.g. wear masks. If only non-vaccinated people will wear a mouth mask, it may lead to discrimination. Since the vaccine may not protect 100%, it could be advised to still wear a mask until the virus has reduced enough. Then the masks would just be in place a bit longer, making it invisible who got vaccinated or not.
Taking into account the need for deinstitutionalization, the need to reduce risks also for the future, and the right to free and informed consent on vaccination, including the right to refuse vaccination, it is evident that vaccination cannot be the only action undertaken to counter the COVID19 pandemic. Deinstitutionalization and full realization of the UN CRPD is the only way to protect the world from similar ravages in the future.
Perhaps, in practice a vaccination team may enter an institution to perform the vaccinations there, or a box of vaccinations is distributed to hospitals. This could lead to a number of problems. In fragile systems, boxes with vaccines could even be stolen and never reach the persons with psychosocial disabilities, especially in places where exploitation and abuse of patients is wide spread and unremedied. In case of a visit of a vaccination team, persons could be pressured to make urgent decisions while the team is there, or being told it is their only chance (now or never). The residents should be informed well in advance when the vaccination would be possible, to be able to make their own decision, which may take some time to weigh to pros and cons.
If a person is in a crisis, it may not be the right moment to discuss or administer vaccination. A person with an acute psychosis or being overmedicated may actually not remember it afterwards. This cannot be handled lightly. Enough time and support must be given to the decision making processes. If the vaccines would just be available at the institution, it could allow for “vaccination whenever the person is ready”, yet the mere distribution of boxes could also lead to unmonitored practices and undue influence, especially since disregard for legal capacity of residents inside institutions is often deeply rooted and embedded in cultures, and unlikely to change without making any exceptional efforts.
Especially in regards to persons under full and plenary guardianship, forced placement or forced treatment it may not be wise to just let institutions handle the vaccinations themselves, and it would be better if the process was embedded with external safeguards.
The idea of a simple uniform procedure with mass line ups or quick group injections cannot be applied, since all the residents have the right to free and informd consent, and they have individual needs as well. The actual diversity inside institutions is wide ranging and very mixed in practice.
People in institutions may have certain individual needs during vaccination, e.g. based on a disability (e.g. going slowly step by step, needing a support person, feeling safer not being alone in the hours after vaccination), but also regarding culture (customs) or gender (e.g. gender based violence). These needs are often intertwined with psychosocial disability, and must be accomodated in line with the will and preferences of the person. E.g. after gender based violence, a gender preference regarding nurses who administer the vaccine may be perceived as a need rather than a preference. A person with a phobia for germs may not feel comfortable in group line ups. When a person is desoriented, perhaps the vaccination can be made a memorable moment, e.g. unlike regular injections, or e.g. distribute certificates of proof. Each person is unique. In practice this will mean that a careful approach, enabling variety and flexibility is needed, to adapt to individual needs.
When a vaccination team visits an institution, they should probably visit more than once, in case people need more time for the decision. The team could announce immediately that they will come back at another date, in case people have not made their decision yet. This will also allow persons in very severe mental health crisis to possibly recover before making the choice in a more calm state. Psychosocial disabilities are characterized by fluctuations, and e.g. moodswings may cause a person to make a choice and think differently about it the next day. In case the person rejects the vaccine and later changes their mind, this should be possible. The vaccination preferrably should not be a “one day event”. A proper and respectful vaccination process requires sensitivity to individual needs.
The vaccination roll out in institutions needs a hybrid mix of hospital staff and external parties to bring the needed level of communication and trust, and to ensure a fair process to the participation of residents in the decision making and vaccination process.
After vaccination, people may also need a debriefing and follow up on how they feel. They cannot be left neglected directly afterwards, ‘as if nothing happened’. They could have side effects or an allergic reaction, or feel scared or anything else. Most of all, they cannot be left in the current conditions in institutions, exposed to a range of human rights violations and neglect. This time, their lives must be saved for real.
Combine vaccination, with decision support, monitoring, alleviation and deinstitutionalization Any vaccination programm in mental health institutions should be coupled with a support system for decision making, and a deinstitutionalization programm.
Visiting institutions for vaccination should be combined with monitoring, which can start with simple observance of the living conditions, and e.g. ranking the priority for deinstitutionalization, alleviation and urgent action on a scale 1-5 (1 = immediate action or abolition, 5 = voluntary and acceptable). The ranking can be done per person, per group, per institution, and will enable follow up action.
In order to react instantly to some of the inhumane conditions in institutions, an alleviation budget must be present to lift the most pressing burden currenly imposed on the residents of institutions. Alleviation could comprise urgent action to ensure dignified living conditions, sanitary and hygiene provisions, food and healthy living, personal protection such as masks and so on. It also comprises ending solitude and neglect by e.g. psychosocial support, therapy options, enabling outdoor activities, social activities. This is the moment for true saviour.
A moratorium on new admissions is needed, and community based support must be readily available. Doors must be unlocked so that people are free to leave. Support should be disconnected from location, and be free from coercion. Everybody can flourish with the right kind of support.
There must be a timely follow up action to vaccination in institutions. Vaccination must mark the start of extended efforts at all levels, united in the priority to end institutionalization and to improve the quality of lives of those concerned. The united push for deinstitutionalization during the COVID19 -tragedy with all its utmost darkness brings a thin ray of hope that amidst of all the hurt also something positive could emerge in the form of a historical development of human rights as part of the human response to the grave and systematic suffering in institutions.
Let the vaccination process be the start of truly supporting the lives of persons with disabilities, and ensure no further harm is done to this group, and not abandon them again after vaccination, but ensure they have a life worth living.
What if the vaccination team would be a rescue team, to free the people from the shackles?
About Jolijn Santegoeds
EDF Board of Directors, Jolijn Santegoeds is a user/survivor of psychiatry. Despite the fact that the Netherlands is not considered as the most problematic country in the area of mental health services, Jolijn had to face a range of forced and degrading practices when she was 16 years old. The institution that hosted her forced her to isolation through others. Jolijn’s main activities are aimed at stimulating alternatives to forced treatments and the prevention of torture and ill-treatment in health care. In the context of the Dutch law reform on forced psychiatric interventions, she developed an alternative model, called the “Eindhoven Model”, which is based on using Family Group Conferencing for supported decision-making to avoid forced psychiatric interventions. In 2014, Jolijn Santegoeds became a Board member of ENUSP for the Northwest region. She is also a co-chair of the World Network of Users and Survivors of Psychiatry (WNUSP), which aims to secure the rights of persons with psychosocial disabilities everywhere around the world. Since May 2017, she has been elected in the EDF Board of Directors.