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We are very concerned by the situation of persons with disabilities living in institutions. The estimated 1 million persons with disabilities that live segregated in residential institutions are now more vulnerable than ever as they face increased risk of infection by COVID-19, physical and psychological abuse due to isolation, neglect, and abandonment.

Reports show this is already happening in several countries

Lack of personal protective equipment for persons with disabilities and staff of institutions leads to higher risk of infection- for both staff and residents. The risk is compounded due to the communal life typical of institutions;
Lack of care and residents left unattended due to staff shortage – staff cannot work as they are infected or under quarantine, or do not work because of fear of becoming infected;
Forced medication and forced restraint measures under the pretence of preventive measures;
Forced confinement leading to lack of contact with outside world – family, friends and others.

Denmark
Residential institutions and psychiatric wards in hospitals are considered vital functions to be maintained. The service has been adapted to less physical contact and increased focus on hygiene. Clear guidelines have been adopted (after a period of uncertainty) stating that persons with disabilites in institutions can visit/be visit as long as they comply with current guidelines of social isolation (2 metres apart and maximum gathering of 10 people).

France
In Alsace, the manager of the residential institution “association Marie-Pire” shared with Le Monde discrimination in medical treatment:

A doctor refused to go to the institution to certify a death
On 25 March, the staff called emergency medical services 5 times for 5 different residents. The response they got was to stop calling as the services were over capacity. The medical services didn’t send an ambulance.
The day after the manager had a meeting with the regional health authority. He was told that persons with disabilities would not be received by hospitals. They said they would support the institution with end-of-life care and psychological support for staff.

Greece
Psychiatric units are locking persons in their rooms and depriving them of access to mobile phones and the internet. Contact with family or friends is often prohibited or needs to be done through a single phone, which increases the chance of transmission of COVID-19. Psychiatric units are dealing with staff shortages due to many workers not showing up through fear of being contaminated.

Germany
Residential institutions face a serious lack of personal protective equipment and of funding to support their preventive measures.

We released a statement calling on authorities to act fast on this.

The United Nations Subcommittee on Prevention of Torture has issued a statement.

Italy
70 people became infected in an institution for persons with intellectual disabilities. Managers admitted that residents and staff lacked personal protective equipment;

Poland
52 residents (out of 67) and 8 staff (out of 14) became infected in a residential institution in Poland;

Romania
242 residents and 59 staff became infected in the psychiatric institution Sasca Mică

68 (out of 154) residents and 35 (out of 103) staff are infected with COVID-19 in another psychiatric institution in Costana. Staff was hospitalized but residents were not.

Spain
The press reported several of these cases, including 43 deaths in a retirement home and at least 12 suspected cases in an institution in Granada. There are also reports of support services that are in dire need of masks, gloves and gowns – they are resorting to homemade solutions and are even microwaving equipment in the hope of sterilising them.

Spain

The ethical guidelines of the Spanish Society of Intensive Care Professionals (Spanish), has an example of what worries:

Page 12, specific recommendations:

“4. Cualquier paciente con deterioro cognitivo, por demencia u otras enfermedades degenerativas, no serían subsidiarios de ventilación mecánica invasiva”

“4. Any patient with cognitive decline, due to dementia and other degenerative disease, will not receive mechanical assisted invasive ventilation.” (roughly translated)

We are very concerned that this excludes a significant population with intellectual disabilities, who have the same chance of survival and the equal right to access healthcare.

Italy

The guidelines of the professionals of anesthesia, resuscitation and intensive therapy (English) are discriminatory:

3. An age limit for admission to the ICU may ultimately need to be set. The underlying principle would be to save limited resources which may become extremely scarce for those who have a much greater probability of survival and life expectancy, in order to maximize the benefits for the largest number of people. In the worst-case scenario of complete saturation of ICU resources, keeping a “first come, first served” criterion would ultimately result in withholding ICU care by limiting ICU admission for any subsequently presenting patient.

4. Together with age, the comorbidities and functional status of any critically ill patient presenting in these exceptional circumstances should carefully be evaluated. A longer and, hence, more “resource consuming” clinical course may be anticipated in frail elderly patients with severe comorbidities, as compared to a relatively shorter, and potentially more benign course in healthy young subjects. In Italy, general criteria for ICU admission were explicitly addressed in a 2003 publication [1] and in a multidisciplinary consensus document released in 2013 for advanced care planning in patients with endstage diseases

United Kingdom

“The guidance from the National Institute for Health and Care Excellence (NICE) says that all adult COVID-19 patients should be assessed for “frailty” when admitted to hospital, and that “comorbidities and underlying health conditions” should be taken into account”.

While this was later updated to exclude certain types of disability (including Cerebral Palsy), it still does not go far enough: It is the use of the CFS “frailty” scoring system that causes most alarm, with the guideline suggesting that those with a score as low as five – those seen as “mildly frail”, who often need help with transportation, heavy housework and medication (nine represents someone who is terminally ill) – might not be considered appropriate for critical care and might be steered towards end-of-life care instead if their condition deteriorated.

The clarification provided by NICE didn’t go far enough as it still means that certain persons with disabilities (such as learning disabilities) are still in danger of not receiving care:

Maureen Piggot, a member of EDF’s executive committee, said: “I welcome the clarification of the NICE guidelines, but it does not go far enough. The UK needs to follow the UN Convention on the Rights of Disabilities and explicitly ensure that there is no discrimination against persons with disabilities – this includes healthcare guidelines that provide equal access to life-saving support.”

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