By Jolijn Santegoeds, 9 December 2020
The issue of vaccination of persons with disabilities in institutions brings many thoughts and questions. The prioritizing of access to vaccination by persons with disabilities in institutions is understandable. While the vaccination of persons with disabilities in institutions may sound like a simple solution, in practice, it is far from simple. The free and informed consent on vaccination of persons deprived of legal capacity and liberty must be guaranteed. The practical roll out of vaccination in mental health institutions will require a careful approach. The role of the pharmaceutical industry in the mental health sector may also carry some important lessons. Vaccination alone is not enough. The safest option is deinstitutionalization.
Human rights emergency in mental health institutions
COVID19 has sharpened inequalities and has deepened human right violations.
All over Europe, mental health care is nowadays stripped off from the gains of past decades in terms of the availability of supportive therapies, social activities, leaves and visits. The core character of institutional settings have reverted back to confinement and medication, as if the mental health system lapsed back into the past century.
The situation is even worse in many places in Central and Eastern Europe, where the availability of supportive therapies in institutions had never been realized even before the pandemic, and in numerous places the the living conditions of persons in institutions are horrendous, with groups of people confined in degrading conditions, even lacking basic hygiene measures. (See e.g. Bulgaria , Ukraine )
Even before the pandemic, there was a pre-existing human rights emergency in many institutions, with numerous practices amounting to torture and ill-treatment, including large scaled preventative and arbitrary detention, the administration of mind-altering medication without consent, seclusion and restraint, even cage beds in some countries, and forced ECT (electro-convulsive-therapy). On top of that there have been repetitive scandals in the mental health sector of e.g. exploitation, unbearable neglect, and systematic sexual abuse, as well as persistent complaints about the harm done by psychopharma. In addition, the staff in institutions is usually tasked with arranging the institutional routines and has generally little time for individualized personal support. Even before the COVID19 pandemic the situation in the mental health case sector demanded urgent remedy.
Even before the pandemic, there was a call to abolish such institutions, and abolish forced treatments and any other practices which cause suffering and do not amount to recovery or wellbeing. Even before the pandemic, the neglect and torment in these places brought many people to tears, and repeatedly we, Europeans, said to ourselves this had to stop.
COVID19 doubled the emergency
Humanitarian crisis such as war, disaster or pandemic have shown to be absolutely devastating to the conditions in institutions, causing misery and suffering of the worst kind . Considering that the mental health institutions were already unable to really meet the needs of the residents, further constraints are obviously taking a horrible toll. The measures such as lockdown made existing atrocities worse. (see COVID19 Disability Rights Monitor report)
Confinement, regimes of overmedication, minimized human contact, no social visits and no monitoring. At the same time there is an increased contraction risk due to staff rotations, and an increased mortality risk . So while the situation inside these mental health institutions is worse than ever, the decision was made to lock the doors, leave these people fully on their own in dangerous situations, unable to leave, and without monitoring. In all those months of lockdown measures, the people in institutions suffered the most by far. Their lives have been frozen, while they were stuck at the bottom.
Deinstitutionalization during the pandemic
The only right thing to do now, is to make real and sustainable efforts to secure the rights of persons with disabilities. Overall this starts with protecting the very lives and basic living conditions. Practical tools and methods to achieve better living conditions are deinstitutionalization, ending forced treatments (including forced medication and Community Treatment Orders), involving persons with lived experience in the design and planning and transformation of services. The UN Convention on the Rights of Persons with Disabilities (UN CRPD) offers a full set of human rights standards to be implemented.
Since the measures to protect against the COVID19 virus will be in place for a prolonged period of time, action must be taken to transform the way support is given to persons with disabilities. The risk of contracting COVID19 is not depending on the type of disability, it is dependent on where you live and how many people you are in contact with . Deinstitutionalisation is the safest option.
There are actual developments which show it is possible to deinstitutionalize during a pandemic , without sending people away empty handed. Investments should be made in supporting independent living and family type care, which is far more adaptive to the individual needs of the person than living in institutional settings where the institutional interests prevail over the individual needs. The COVID19 emergency once more underlines the increased risks and increased burden that people with disabilities face in seggregated settings. Also small group homes are not safe places, due to staff rotation. Personal assistance is on average 6 times cheaper than institutional care, and safer in times of a pandemic. Without investing in the communities, existing problems like poverty and a lack of community based support will remain the driver for (re)institutionalization. Especially when considering the increase in poverty, unemployment and increased support needs resulting from the pandemic, the need for true investment in inclusive communities is evident.
Prioritizing vaccination for persons with disabilities in institutions
Although the risk of COVID19 contraction depends on the number of contacts, there is an increased risk on severity of COVID19 infection and case fatality for persons with various types of disabilities. In order to protect the most vulnerable people from contracting the virus, and to ensure that nobody is left behind in getting access to vaccination, there is a good argument to prioritize persons with disabilities in institutions in the vaccination roll out.
But vaccination cannot replace deinstitutionalization. The risks of living in institutions are more than evident, and no longer can such grave suffering and immense violations of human rights be left unremedied in Europe. Any vaccination programme must be accompanied by a deinstitutionalization programme.
In addition, there are many considerations to be made regarding the practical organization of vaccinations in institutions. This starts by reflecting on how the vaccination is positioned overall, followed by practical concerns about the actual vaccination process of persons in institutions, and e.g. how to ensure that all persons will have the right to decide about vaccination themselves, including those who are deprived of legal capacity and liberty under the current systems. It appears to be a very complex issue.
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.