Lockdown has caused everyone inconvenience, stress and frustration. Not to mention in some cases, crippling financial loss. However, spare some thought for those people who are intellectually compromised and need assisted living. It has been particularly difficult for them to lose their carers or connection to social workers over a long period of time. Their vulnerability during this time may have been ignored – particularly with regard to shopping, doctor’s visits, paying of bills, etc.
People with autism, Down Syndrome and cerebral palsy, for instance, may have previously enjoyed a measure of independence with regard to their condition, but in many instances they cannot drive. During lockdown stage 5, we were not even allowed to go out of the front door for five weeks except to the supermarket and the chemist. This, for many may have become an intolerable situation.
People in the community, neighbours and family members could certainly rally round to assist. But people with ID often follow their own routines and are not always prepared for sudden changes that may increase their levels of anxiety, causing behavioural challenges which can potentially lead to mental health conditions.
Factors to consider regarding those living with ID
- People with ID frequently rely on hands-on assistance from other people with daily self-care tasks. Social distancing therefore becomes particularly challenging, further increasing the risk of disease transmission. For many, touch is the most powerful form of communication.
- Group homes may be especially hazardous because in a confined space, there is little possibility of social distancing. These homes become a breeding ground that suits Covid-19 – causing great stress for those ‘trapped’ in this situation, including caregivers who have to continue working with the people in their care.
- Caregivers may also find themselves facing challenging and competing obligations: to stay home if they are feeling sick, or to risk infecting those who rely on them for daily functioning.
- In times of pandemic, people with ID are likely to have difficulty in advocating for themselves and will have to rely on others to keep them safe from infection. For those with mild ID who function in the community with little support, their cognitive ability may hinder adherence to the public health measures put in place to reduce the spread, such as: self-isolation, handwashing and physical distancing from others.
- For people with autism, self-isolating and physical distancing can heighten their level of stress because of a change in habits. They may become over-focused and subsequently overwhelmed by the amount of information related to COVID-19 in the media and on social media. Such behaviour may heighten their levels of anxiety and paranoid thinking, ultimately leading to difficulties in their behaviour, and thus further reducing their ability to effectively engage in social distancing.
- Emerging research on COVID-19 shows that the coronavirus pandemic has increased psychological distress both in the general population and among high-risk groups. Behaviours such as physical distancing, as well as social and economic impacts, are worsening mental health consequences.
- Research on past pandemics shows that disabled people may find it harder to access critical medical supplies, a situation which can become even more challenging as resources become scarce.
- Some people with disabilities report higher levels of social isolation. They may experience intensified feelings of loneliness in response to physical distancing measures. Social isolation and loneliness have been associated with increases in heart disease, dementia and other health problems according to the National Academies of Science, Engineering, and Medicine.
- It is important not to confuse health with disability. Many people with disabilities are healthy. However, many may have underlying or secondary aspects of their disability, such as suppressed immune systems or respiratory concerns, which COVID-19 could worsen. These aspects of co-morbidity result in the intellectually disabled being classified as “high risk” and more likely to die after contracting COVID-19 than the general public – adding fear and stress to an already difficult situation.
A mother explains her anguish with regard to her intellectually-disabled daughter:
“I might be able to explain to her why we cannot visit, but I would not know if she understood. In all likelihood, it would give her no coherent sense of what is happening in the world. Not only must these compromised people meet this virus tsunami with frail bodies, they must also face an additional foe: failure by authorities and the general public to recognise and value their lives. When you speak of the vulnerable, those most likely to suffer worst from this virus, think of grandma and grandpa, of uncle with the weak heart, the migrant in a crowded detention centres, the prisoner — but think also of those who live graceful lives of love. People like my daughter.”
The story of Sunfield Home
Twenty years ago, Chris and Lynne Bennett, parents of a young girl with Down Syndrome, pursued their dream of establishing a home for their daughter and other intellectually disabled young adults in the Western Cape. Together with other parents, they founded the Sunfield Home in Wellington, providing a loving and nurturing environment for over 100 residents and day-care adult individuals.
Each individual is screened to evaluate their strengths and allocate activities according to their abilities. A protective workshop has been established where contract work is undertaken, as well as arts and crafts activities. An employment scheme has also been developed and as a result permanent and successful positions have been found within the surrounding wine and cheese industries.
Find out more about us at: www.sunfieldhome.co.za