People with a learning disability face an increased risk of a more severe case of corona. They are also severely affected by the measures taken to protect them. In a letter, the Netherlands-based Knowledge Coalition for Care of People with Learning Disabilities has called for knowledge and expertise in this field to be used to support people with learning disabilities, their families and care professionals as best as possible. For example, with access to practical information, booster vaccinations and identifying risks and opportunities.
The letter dated November 19 to the Dutch Ministry of Health, Welfare and Sport, the House of Representatives, the Outbreak Management Team and the RIVM (National Institute for Public Health and the Environment) was written by sector and knowledge organisations – VGN (Association of Health Care Providers for People with Disabilities), Vilans, ZonMw (The Netherlands Organisation for
Health Research and Development), and the Association of Academic Workplaces for Persons with Disabilities.
Professor Petri Embregts, chair of the Association of Academic Workplaces, and Vilans chair Mirella Minkman are among those who signed the document.
Why are people with intellectual disabilities actually at increased risk of a severe case of corona?
Minkman: “Research has shown that people with learning disabilities have generally poorer health. They often have more illnesses and age faster. Cardiovascular disease and obesity are more common in this target group and are risk factors for corona. In fact, both factors seem to be linked to a worse prognosis. Also, on average, people with learning disabilities have a greater risk of lung infections and a more serious progression of disease.’
It is well known that people with learning disabilities have generally poorer health.
‘But it’s not just about the physical effects,’ Embregts continues. ‘It’s also about what the crisis does in daily life. Many people with disabilities can also be socially vulnerable because of all the rules and new challenges. This can happen, for example, when there is a lack of accessible health information, loss of support due to illness or self-isolation of family caregivers, or reduced staff numbers. In addition, people with learning disabilities often live in homes where physical distance and the level of ventilation needed to prevent virus transmission are difficult to maintain.’
In the letter, the Knowledge Coalition recommends that people with intellectual disabilities receive booster vaccinations as soon as possible. Why?
According to Embregts, people living in an institution can already receive a booster shot as a priority, but this should also apply to vulnerable people living at home. ‘People aged 18 and over who live in a care institution and employees in care and social support aged 18 and over who have contact with patients and clients are being offered a booster vaccination. We are very pleased that all vulnerable citizens living in care facilities are the first to receive the third vaccination. Compared to the previous vaccinations, it is very good that, in addition to the vulnerable elderly in care institutions, attention is now also being paid to people with a learning disability. However, people with learning disabilities who live at home often also have very fragile health. The difference between ‘home’ and an institution is not so black and white; there are various forms of housing. We therefore hope that the letter will draw attention to this group of vulnerable citizens.
Another recommendation in the letter is to register corona online among people with learning disabilities. Why is that necessary?
Embregts: “At the beginning of the pandemic, there was a lot of concern in the Netherlands about the coronavirus and its impact on people with learning disabilities. The national COVID-19 registration of the RIVM focused on the general population. This RIVM registration does not specify who has a learning disability, so specific data of this target group was missing at the beginning of the pandemic. Therefore, the academic workshop Sterker op eigen benen (Stronger on Own Feet), commissioned by the Ministry of Health, Welfare and Sport, made an online registration database available from March 2020. Through this database, we have a better view of what is happening. The purpose of this registration is to collect relevant data on COVID-19 infections among people with intellectual disabilities on a national level during the pandemic. Collecting this data as early as during the pandemic will prevent the loss of relevant information. These data will be submitted to the Ministry of Health, Welfare and Sport at an aggregated level.
Minkman: “It’s about data in numbers, but the stories behind the numbers are also important. As a knowledge coalition we think this is important so that we can see what is happening and what is needed. And also, where there are still questions, so that we can either better share existing knowledge or develop new knowledge as knowledge partners.
The knowledge coalition wants to monitor the use of technology that adds value to people with disabilities and their loved ones in times of corona. Are there concrete examples of this type of technology that can be mentioned?
Nowadays, face-to-face contact is not always possible,’ says Minkman. In that case, eHealth can be a solution. By eHealth we mean digital technology related to health, care or support. For example, the use of computers or smartphones to view information in the patient’s digital file. There are different types of eHealth applications that can help people with learning disabilities in their daily lives, such as video calls, video clips to learn simple skills and apps that give you more control over daily life, to name just a few examples.’ Embregts adds that digital contact with family and acquaintances also proved possible for more people.
Finally, accessible knowledge is very important. So where can people go?
Embregts and Minkman point out that in most countries there is accessible information for care providers and people with disabilities. There is information available on knowledge platforms such as the Vilans website, as well as other national healthcare platforms and associations for people with disabilities.